Parent Organisations Summit
In 2008 parent representatives from 18 countries came together to lay the foundation for our work today. They composed the “Declaration of Rome”, ten demands for preterm infants and their families, which was later handed over to politicians of the European Parliament. Ever since, EFCNI has held annual meetings for representatives of parent organisations to share ideas, exchange experiences, and receive training and education with the common goal to improve the situation of maternal and newborn health and in particular of preterm birth around the world. What started off as a small meeting has meanwhile become a summit with parent organisations, experts, and partners from all over the world. At the Parent Organisations Summit (POS), the Parent Advisory Board comes together to discuss the milestones of the upcoming year.
The Parent Organisations Summit 2024 proved to be an inspiring and empowering weekend. 72 participants from 47 parent organisations and 32 countries joined us in Freising, Germany from Friday, 26 April to Sunday, 28 April. During presentations, talks, and workshops we exchanged knowledge and experiences, discussed ideas and strategies, and connected over our shared commitment to improving neonatal and maternal care.
Also in 2023 we look back on an eventful, successful and inspiring Parent Organisations Summit (POS). Every year, EFCNI invites the international community of preemie parents to meet in Freising, near Munich, Germany to connect and network, exchange experience, learn from one another, support each other, and last but not least, make and maintain friendships. This year, we had the honour to welcome around 80 participants from 36 countries.
We also had a special reason to celebrate, as it was our 15th POS in our foundation’s history!
First time participant Dr. Veronika Kmetóny Gazdová, Malíček, Slovakia
Learning from real life experience and best practice examples
The POS places special emphasis on empowerment and a mutual learning experience. Therefore, the meeting offers a opportunity for international parent organisations to present their work, activites and projects to the parent representatives present. This year, three outstanding projects were presented again.
Empathy is a powerful “social glue”, Dr. Eleni Vavouraki, Ilitominon, Greece
The development of a professional psychological parent support from a simple peer
counseling to having a psychologist in the NICU, Jarmila Sestrienkova, Malíček, Slovakia
Preemie Chats: from a simple Q&A session for parents to a main source of education for
various stakeholders, Fabiana Bacchini, Canadian Premature Babies Foundation (CPBF), Canada
Time-honoured tradition – the EFCNI Award
The EFCNI award ceremony has become a time-honoured tradition at the Parent Summit. It is an opportunity to appreciate the great work of the parent- and patient organisations in our network. This year, we had the honour to celebrate the fantastic work of the three following organisations.
Early birds (Ranni ptashky) for organising digital FINE (Family and Infant Neurodevelopmental Education) trainings in Ukraine
Malíček, for establishing psychologic peer support for NICU parents
Miracle Babies Foundation, for developing the educational, informative Nurture programme on preterm birth and thorough long-term follow-up.
Our heartfelt thanks go to our committed parent organisations community. Your dedication to improving the lives of preterm babies and their families is truly inspiring!
We’d also like to thank all speakers and workshop organisers for their contributions. Your input makes us leave this gathering with new knowledge and loads of motivation every year!
The Parent Organisations Summit, POS 2022 sure was a remarkable reunion. After a hiatus of almost 2,5 years, caused by the COVID pandemic, the international community of preemie parents could finally meet again at the second POS in Freising, near Munich, Germany! We all look back on three days of inspiring talks, insightful project presentations, exchange of experiences, and the heartwarming joy of seeing good friends again and making new ones.
Learning from best practice examples
Nothing is as motivating as hearing the success story of someone else who is in a similar situation as you. At POS, it is therefore important for us to share such success stories so that we can learn from each other and gain inspiration for our own projects. Therefore, we were able to learn from the best practice examples from our network this year as well.
- FINE-Training in times of the pandemic presented by Livia Nagy Bonnard (Melletted a Helyem Egyesület), for Hungary and Corina Croitoru (ARNIS, formerly known as Asociaţia Unu şi Unu), for Romania
- From COVID crisis to a Hospitalized Newborn Charter presented by Charlotte Bouvard, Audrey Reynaud, and Oxana Guyot (SOS Préma), France
- Nurture E – The EEE Impact with EEE standing for Evidence, Education, and Empowerment, presented by Kylie Pussell (Miracle Babies Foundation), Australia
- The culture of breastfeeding and human milk donation before and after the pandemic: best practice example from Brazil, presented by Denise Suguitani (Prematuridade.com), Brazil
Sharing and gaining knowledge through workshops
The POS is not just about expanding your network of support and like-minded people. We also want to learn from each other and empower each other. EFCNI wants to contribute to professionalising parent- and patient organizations and to support them in their work as NGOs and in the exchange with medical professionals or political decision-makers.
This year’s workshops:
- The impact of communication with Paula Guerra and Estela Coutinho (XXS prematuros), Portugal
- Advocating for policy change – how to get national decision-makers to listen with Dr Johanna Kostenzer and Aisling Walsh (EFCNI)
- The art of effective negotiation and the principles of fundraising with Silke Mader and Aurelia Abenstein (EFCNI)
- How to argue with evidence-based facts and figures with Dr Eleni Vavouraki (Ilitominon), Greece and Professor Luc Zimmermann (EFCNI)
- Working effectively in a virtual team with Nicole Thiele and Sarah Fügenschuh (EFCNI)
- Healthy leadership – Healthy organisations with Gigi Khonyongwa Fernandez (Nicu Parent Network – NPN), USA
Time-honoured tradition – the EFCNI Award
The EFCNI award ceremony has become a time-honoured tradition at the Parent Summit. It is an opportunity to appreciate the great work of the parent- and patient organisations in our network. The pandemic has affected and influenced all of us and this year’s awarded projects were all related to the pandemic. It seems that this crisis acted as a catalyst for finding solutions and gave us the attitude: Now more than ever!
This year, also due to our long break between summits, we had the honour to celebrate the work of four instead of three organisations.
The winners of the EFCNI Award 2022 with the EFCNI Board of Directors
The awardees:
- SOS Préma for developing the newborn charter for parents and healthcare professionals to support and promote the best possible development for hospitalised newborns in France.
- Asociația Română pentru Nou-născuții Îndelung Spitalizați (ARNIS), formerly known as Asociatia Unu şi Unu, and
- Melletted a helyem Egyesület for organising and implementing FINE (Family and Infant Neurodevelopmental Education) trainings online in Romania and Hungary during the pandemic.
- Irish Neonatal Health Alliance (INHA) for their powerful campaign “15 minutes is not okay”, addressing the harsh separation policies in Ireland implemented in NICUs during the pandemic.
We’d like to congratulate the winners and thank them for their commitment to change and eventually improve newborn care. Some of you have encountered severe obstacles along the way, some of you were even attacked for your commitment, and still, you kept on fighting for your cause. We’d also like to say thank you to every member of our community for getting active and working towards making a change in the care for our sick and preterm neonates. Together we can achieve so much as the past has shown us time and time again.
What a pleasure to meet again
Especially after this long break, we have again become aware of how important the exchange in our network is and how much we spur each other on and give each other strength. We support each other in seeing opportunities in crises and obstacles as help to become stronger and better. We thank all participants for their contribution to this successful meeting. We will remember it for a long time and are already looking forward to the next POS in 2023.
This year we welcomed 35 parent organisations from Europe and beyond at the summit. The three-day long conference felt more like a big family meeting than anything else. All participants – from first-time attendees to those who had been in Rome in 2008 – talked openly, shared their lessons learned as well as their best practices and truly supported each other. International experts on the fields of premature health, follow-up and neonatology were also on site to inform the parent organisations about the latest developments. EFCNI provided workshops that covered among other things the art of negotiation with industry partners, the pitfalls of social media, and the composition of a policy brief.
From the left: Silke Mader (EFCNI), İlknur Okay (El Bebek Gül Bebek), Diana Gamulescu (Asociatia Prematurilor), Fabiana Bacchini (Canadian Premature Babies Foundation), Corina Croitoru (Asociatia Unu si Unu), Nicole Thiele (EFCNI) and Aurelia Abenstein (EFCNI).
The Parent Organisation Summit (POS 2020) was filled with great accomplishments! This year we did not only present three parent organisations with the EFCNI award but four! What they achieved in 2020 for preterm babies and their parents in their countries is exceptional! We warmly congratulate El Bebek Gül Bebek (Turkey), Canadian Premature Babies Foundation, Asociatia Unu si Unu (Romania) Asociatia Prematurilor, (Romania). Read more about the EFCNI Award.
How important teamwork is for our common goal to improve the health of preterm born infants, was pointed out to us by Ornella Lincetto, World Health Organization (WHO). Collaboration on all levels – in communities, facilities on a national level and globally are needed for change to come. It was not surprising that the topic of cooperation accompanied us through the whole three days.
Gigi Khonyongwa-Fernandez’ interactive presentation literally got us off our chairs and made us face an inextricable knot of hands and people. Some of us eventually untied the knot through communication and collaboration, some of us just bonded over the funny experience. But it all kept us thinking about how we should work in the future. Now we know how NICU Parent Network, USA, was able to develop such a successful collaborative NICU staff education initiative.
Collaboration is not only an important factor to improve the work of our parent organisations on a national level, it is also vital that we work together globally in order to achieve our aim of improving health and social inequalities linked to preterm birth worldwide. One year ago, we launched our global initiative for newborns born preterm or ill and their families – GLANCE. So far, we had an intense and efficient meeting with our Founding Chair Committee in summer and on World Prematurity Day our new website went online. We also released the Global Call to Action for Newborn Care and are very happy that all of our parent organisations took the opportunity to sign it at this year’s POS! Thank you so much, for your support!
Dr Takeshi Arimitsu, Keio University School
We became aware of how much can be gained by sharing our experiences on a global level, when Dr Takeshi Arimitsu talked about the achievements, challenges and chances in Japan. At Keio University School Dr Arimitsu had saved a baby born at 25 weeks weighing 268g, including the parents as much as possible on the way. This extraordinary achievement triggered a lot of questions from all participants, which Dr Arimitsu was happy to answer.
What becomes of preterm born children and their parents once they leave the NICU? Professor Dr Dr Dieter Wolke, University of Warwick, presented the newest research findings about the effect that preterm birth has on children and parents into adulthood. Showing that there are a lot of aspects after discharge that can have a positive influence in the life of preterm born adults, such as sensitive parenting and a focus on social integration and social skills. Professor Dr Dr Wolke expertly knew how to combine research facts with common sense and present them in a way that everyone understood.
Our parent organisations also have a lot to teach. They all share the common goal to give every baby the best start in life, but the circumstances in each country differ. We were glad to present best practices from national organisations, so various approaches were shared. Paula Guerra from the parent organisation XXS – Associação Portuguesa de Apoio ao Bebé Prematuro gave us an insight into her work in Portugal. She presented the elaborate approach that XXS takes to implement the European Standards for Care of Newborn Health (ESCNH) on a national level. What impressive work!
Diana Gamulescu, and Adina Clapa informed us about their important work in Romania. The parent organisation Asociatia Prematurilor successfully built up the first private follow up centre in their country- in two years it has reached about 1.000 families with its free service. Well done!
A psychological training for parents of preterm babies and healthcare professionals was started by El Bebek Gül Bebek, Turkey. Very early in her project İlknur Okay realised that knowledge can reduce the stress parents of preterm born babies experience. So far, the training El Bebek Gül Bebek offers, reached nearly 800 parents of preterm infants. Such a sound approach!
EFCNI also offered workshops in which the parent organisations could get useful information. For example, Professor Dr Dr Dieter Wolke and Nicole Thiele held a workshop on how a policy brief is written. Together with parents from all over Europe they empowered the participants to develop their own policy brief using the RECAP preterm cohort platform as an example. Bringing scientific knowledge into actual clinical practice is often missing in scientific projects. A well written policy brief can help to deliver scientific information to politicians, which is one important step for knowledge transfer.
Our parent organisations once more showed us, what can be achieved by dedication, determination and collaboration! Changing the circumstances under which preterm born babies are treated is hard work in every country around the world. It is wonderful to see that we are not alone in this fight. You motivate us!
A big thank you goes to all our speakers and participants, who made these three days so informing and interactive. We cannot wait for the next Parent Organisation Summit to happen!
January 2019
15th Parent Organisations Meeting
As a time honoured tradition, January was the time of year again where EFCNI hosted its meanwhile 15th Parent Organisations Meeting (POM) in Freising, Germany. From 25 to 27 January, about 100 participants from Europe, Africa, North America (in total from more than 30 countries) discussed preterm health topics, shared knowledge and experiences, networked and motivated each other.
The meeting offered again a great opportunity for international organisations to present their work, activites and targeted projects to the group of international parent representatives. Katarina Eglin, spokeswoman of Das frühgeborene Kind e.V., Germany, introduced the work of developing and establishing Guiding principles for palliative care and grief counselling in neonatology. She provided insights into the emotionally challenging field which is still a taboo topic and often leaves parents, friends and relatives as well as healthcare professionals alone. With hands-on advice, for example what or what better not to say to bereaved parents, the guidelines aim at providing pragmatic support. An English version shall be available soon. Corina Croituro, Head of UnusiUnu, Romania, introduced the remarkable work of her organisation. The project Little Human in Therapy implements – little by little – family centred care in the hospital settings. With FINE Trainings, funded and organised by UnusiUnu, the parents and the clinical care givers are given teachings in how to handle the little patients in a medically appropriate, yet empathetic way. As in the last year, the participants of this year’s POM got to enjoy a lovely and touching photo exhibition “Dads in the Focus”, which Oleksandra Balyasna from Ранні пташки (Early Birds), Ukraine, realised together with the support of the Ministry of Health and the Association of Neonatologists of Ukraine. The exhibition stressed the importance of fathers in the NICU as equal partners in parental care. It was presented first in Kiev and then on display during the three-days-meeting.
This year’s gathering also marked the launch of EFCNI’s latest large-scale project: GLANCE – the GLobal Alliance for Newborn CarE. GLANCE will put networking for and representation of preterm born babies and families on a global level. In the future, parents and families from the different corners of the world shall join forces to carve the way for the best start in life for every newborn – worldwide.
The first day of the POM ended with the traditional EFCNI Award Ceremony. This year’s well-deserved winners are: the team of MTÜ Enneaegsed lapsed, Estonia, the team from Prematurforeningen, Norway, and the team of African Foundation for Premature Babies and Neonatal Care (AFPNC), Ghana. EFCNI cordially congratulates all awardees.
The second day of the POM was dedicated to talks, workshops and last but not least, the election and announcement of the new Parent Advisory Board. As in the year before, EFCNI welcomed external speakers from the field of neonatology and research. Dr Michael Zeller from the Hospital Dritter Orden, Passau, Germany, elaborated in his talk “Yes, we can. Opportunities and challenges for the care of newborn infants”, how the re-design of their NICU followed the approach of family integrated care and how this has significantly and provably improved patient outcomes. Dr Lukas Mileder from the Medical University Graz, Austria, gave an impressive talk on “The importance of simulation training in the NICU”. Dr Mileder is involved in SimCharacters, the company founded by neonatologist Dr Jens-Christian Schwindt, that came up with Paul, the preterm simulation doll enabling doctors and students to train emergency scenarios under real-life conditions. In the afternoon sessions, Dr Jennifer Zeitlin, Rym El Farei and Anna-Veera Seppänen from INSERM* Paris, France, provided a workshop on “Care, treatment, and follow-up for very preterm born babies and children in Europe – how it is and how it should be”. Furthermore, they highlighted the relevance of data collection, analysis and distribution to push evidence based care for very preterms further. EFCNI was also very happy to have Allison McNulty giving a workshop on “Family support and volunteers”. Project Management and Stakeholder negotiations were further workshops offered by EFCNI to the participants.
With the current Parent Advisory Board parting, it was time to set up the new board of representatives. To respond to the growing EFCNI network also outside of Europe, two global members will now complement the eight European board members. Our congratulations go to Oleksandra Balyasna, Ukraine, Mandy Daly, Ireland, Paula Guerra, Portugal, Alison McNulty, Northern Ireland, Livia Nagy Bonnard, Hungary, Nina Nikolova, Bulgaria, Asta Speičytė Radzevičienė, Lithuania, and Dr Eleni Vavouraki, Greece, Selina Bentoom, Ghana, and Gigi Khonyongwa-Fernandez, USA. Our heartfelt thanks go to the former Parent Advisory Board for the committed work in the last four years.
The meeting was concluded with an interactive Workshops session on Sunday where participants extended experience in reading and interpreting complex research studies.
EFCNI would like to express its sincerest thanks to everyone participating in this year’s POM, making it a stimulating and successful meeting. Special thanks go to the speakers for their motivating and informative presentations and workshops.
We are already looking forward to next year’s event. Our Parent Meeting is also growing up and becomes then the first EFCNI Parent Organisations Summit 2020.
*Institute National de la Santé et de la Recherche Medicale
January 2018
14th Parent Organisations Meeting
As a time honoured tradition, January was the time of year again where EFCNI hosted its meanwhile 14th Parent Organisations Meeting (POM) in Freising, Germany. About 80 participants from Europe, Africa, Canada, and North America, in total from more than 30 countries, gathered to discuss preterm health topics, share knowledge and experiences, and motivate each other.
The meeting was again the perfect event for other international organisations to present their work, events and projects to the group of parent representatives. Alison McNulty, CEO of Tiny Life, Northern Ireland, introduced the remarkable work of her organisation and elucidated the importance of usability of a website in times where digital devices have become inevitable in health issues. Katarina Eglin, spokeswoman of Das frühgeborene Kind e.V., Germany, presented the app ”Hallo Frühchen“ (Hello preemie) for siblings of preterms developed by her association. The app aims at bringing preterms and their older siblings closer together as hospitalisation often impedes bonding between brother or sister and the newborn. Nina Nikolova from Our Premature Children, Bulgaria, gave an inspiring presentation on how to create a paid position in a national parent organisation. With a creative business-oriented approach, she managed to establish her organisation within a few years only. Participants of this year’s meeting also got to enjoy a wonderful photo exhibition which Asta Speicyte Radzeviciene from Neisnesiotukas, Lithuania, realised together with Jolanta Leonaviciute Grigorjeviene. “Born with the sign of genius” was presented first in Lithuania and then on display during the meeting. We hope many more will get to see the beautiful and encouraging pictures showing that preterms are no children of sorrow.
This year’s gathering also celebrated a special occasion: the 10th anniversary of EFCNI! Silke Mader, Chairwoman and co-founder of EFCNI, and Nicole Thiele, Vice Chair of the Executive Board, took the chance to reflect on the time that has passed and acknowledged all allies, supporters and friends of EFCNI. “When we held our first Parents Meeting in Rome 2008”, recalls Silke Mader, “we were just a small group of people. Today we need a ballroom to fit as all in one place. Together we can make that change happen and make the start in life better for preterm babies.”
The ten years’ celebrations started with the traditional EFCNI Award Ceremony. This year’s winners Tiny Life, Early Birds and last but not least Das frühgeborene Kind e.V. Silke Mader and Nicole Thiele honoured the commitment, persistence and creativity of the three winners Alison McNulty, Oleksandra Balyasna and Katarina Eglin as well as their entire teams. EFCNI cordially congratulates all three organisations.
As in the year before, EFCNI could welcome external speakers from the research field. Dr Jennifer Zeitlin and Anna-Veera Seppänen from INSERM* based in Paris, France, provided an overview and current insights of the pan-European SHIPS** and RECAP preterm*** projects. Furthermore, they highlighted the relevance of data collection, analysis and distribution to push evidence based care for very preterm infants further.
Due to its success from last year, EFCNI was happy to have Charlotte Bouvard and Vincent Desdoit from SOS Préma, France, giving their workshop one more time where they coached the participating parents in how to work efficiently with volunteers.
EFCNI would like to thank everyone participating in this year’s POM for a stimulating and successful meeting. Special thanks go to the speakers for their motivating and informative presentations and workshops.
*Institute National de la Santé et de la Recherche Medicale
**Screening to improve Health In very Preterm infantS in Europe
*** Research on European Children and Adults born Preterm
January 2017
13th Parent Organisations Meeting
The 13th Parent Organisations Meeting, powered by EFCNI, took place from 27 to 29 January 2017 in Freising north of Munich. With about 75 participants from more than 30 countries it was the biggest ever. EFCNI had the honour to welcome parents and healthcare professionals from Ghana, Belarus and Brazil for the first time. This meeting has proven that this family is growing and becoming even more international.
As a nice tradition, parent representatives use the Parent Organisations Meeting to present their best practise examples. This year, Livia Nagy Bonnard from Melletted a helyem Egyesület introduced their successful event on breastfeeding in the Hungarian parliament. Monica Ceccatelli and Francesco Collini representing Vivere Onlus from Italy spoke about their continuing effort to promote the Socks for Life campaign. Finally, Dr Eleni Vavouraki, representing the parent organisation Ilitominon, gave some insights in the challenges they had to face when introducing a training on the FINE concept in Greece – “a Greek tragedy with a Happy End!”
One of the highlights was the EFCNI Awards 2017 ceremony: The Irish Neonatal Health Alliance, Melletted a helyem Egyesület from Hungary and SOS Préma from France received an award. In her laudatio, EFCNI Chair Silke Mader and EFCNI Vice Chair Nicole Thiele honoured their outstanding commitment for preterms and ill newborns and their sustainable achievements. EFCNI warmly congratulates Mandy Daly, Livia Nagy Bonnard, Charlotte Bouvard and Audrey Renaud, and their teams.
In addition, EFCNI had the honour to welcome renowned external speakers: Sari Ahlqvist-Björkroth from the University of Turku in Finland spoke about “Close collaboration with parents” – a training programme to facilitate family supportive neonatal care. Dr Jennifer Zeitlin (Inserm) based in Paris, France, introduced the pan-European EPICE and SHIPS projects and their objective to promote evidence based care for very preterm infants in Europe. Finally, Nathalie Bere reportet about opportunities for patient organisations when working together with the European Medicines Agency (EMA).
For the first time ever, one of the seven workshops was held by external speakers: Charlotte Bouvard and Audrey Renaud from SOS Préma accepted the invitation and taught the parents in working with volunteers and in establishing a helpline for affected parents.We thank all the participants for their active attendance.Special thanks to the speakers for their interesting and inspiring presentations or workshops.
Some quotes of participants
„Thank you for having organised such an informative and culturally accepting event. AFPNC is grateful to the EFCNI team for giving us the opportunity to participate. We look forward to the next event. Thank you!”
– Selina Bentoom, AFPNC, Ghana
“The meeting was definitely a watershed for me and for the future of my NGO. It had essential content for all organisations to succeed in their missions. I felt really privileged to be part of the event and to have the opportunity to network with other parent organisations.”
– Denise Suguitani, Associação Brasileira de Pais de Bebês Prematuros, Brazil
“The Parent Organisations Meeting is a very important tool to grow. For learning and networking, but especially for empowering us, create community to become a stronger voice for preemie families.”
– Ilein Bolaños Gonzales, Con Amor Vencerás A.C., Mexico
“The EFCNI annual Parent Organisations Meeting is the best way to learn from each other. Beeing able to listen to best practises gives motivation to keep on fighting for preemies. Together, we are bigger and better!”
– Livia Laas, MTÜ Enneaegsed lapsed, Estonia
February 2016
12th Parent Organisations Meeting
With more than 60 participants from over 30 countries, the 12th Parent Organisations Meeting powered by EFCNI was a great success. The official meeting began on Friday, 26 February, with a pre-course on “How to build up an organisation”, followed by presentations by parent organisation representatives, sharing their experience and practice.
Gert van Steenbrugge from Dutch’s Vereniging van Ouders van Couveusekinderen (VOC) spoke about A quality mark for neonatal care: parents in the lead! Magdalena Sadecka-Makaruk from Polish Fundacja Wczesniak presented her experiences in Establishing the first follow-up centre in Poland and Denmark’s Karina Rothoff Brix from Landsforeningen Præmatures Vilkår introduced the self-developed App Diary for life. Belgium’s Yannic Verhaest from Vlaamse Vereniging voor Ouders van Couveusekinderen (VVOC) illustrated the way From a small gift to a national project. Highlights of the first evening were the presentations on World Prematurity Day activities as well as the EFCNI Award ceremony.
For the first time, the awards included the new category International. The 2016 awardees are malícek, Neišnešiotukas, Nedoklubko, and in the International category Con Amor Venceras. Saturday’s agenda was full of interesting talks and workshops. Inga Warren introduced the FINE programme (The family and Infant Neurodevelopmental Education) and Karen Koldewijn spoke about the ToP programme (Preventive developmental intervention program for preterm infants and their parents).
The representatives discussed common campaign opportunities for 2016 and beyond and Dr Iris-Nikola Knierim from EFCNI gave a status update about the European Standards of Care for Newborn Health project.On Sunday, after four hours of intense work, it was already time to say good-bye. Many participants left as new friends and members of the “EFCNI family”.
We warmly thank all the speakers and the participants for their commitment. Everybody of you have made an important contribution to the success of the meeting! Togehter we have spent three days of stimulating talks, hard work, serious thoughts, and in total a very agreeable time.
Meanwhile everybody arrived at home safely and their work at the base continues. Please find below a selection of impressions from our 12th annual Parent Organisations Meeting.
Some quotes of participants
“An enriching and inspiring conference. See you next year!”
– Amoura Lisumbu, Premature Baby Fund, Belgium
“What an incredible moment to meet and share experiences with all the representatives from all over the world. It was so enriching. Thank you EFCNI!”
– Audrey Reynaud, SOS Préma, France
“Every time that I participate in EFCNI’s Parent Organisation Meeting is like I’m joining my big international family, to spend three days of sharing thoughts, experience, feelings, and dreams. This is my annual dose of inspiration and motivation in order not to give up, despite the big problems we face in my country. Thank you all!!!”
– Eleni Vavouraki, Ilitominon, Greece
“It was a big pleasure to be part of this great meeting. Thank you for your efforts and amazing work you have prepared for us. Looking forward to the next meeting.”
– Nina Nikolova, Our Premature Babies, Bulgaria
January 2015
11th Parent Organisations Meeting
40 participants from all around the world joined the 11th Parent Organisations meeting in Freising at the end of January 2015. Every year, more and more participants gather to share experience and impulses for newborn health and in particular preterm birth.
A big thank you to all speakers at the event! Five parent organisations from Europe shared successful campaigns they created over the past year with the meeting participants. Nina Nikolova, of the Bulgarian organisation Our Premature Children introduced the audience to their campaign “The biggest heroes are the youngest ones” which involved three Bulgarian celebrities and raised much awareness in the country. Asta Speicyte Radzeviciene, of Neišnešiotukas in Lithuania shared her awareness campaign which was so successful that it gained the Prime Minister of Lithuania’s wife as a new patron for the organisation. Audrey Reynaud and Charlotte Bouvard of the French organisation SOS Préma talked about their fundraising experience with charity runs. Katharina Eglin from the German organisations Bundesverband das frühgeborene Kind, explained the project Neo(t)räume, a virtual ideal neonatal unit. To conclude the day, Estela Coutinho of the organisation XXS Associação Portuguesa de Apoio ao Bebé Prematuro in Portugal, shared the organisation’s experience with a nationwide project to improve the situation in neonatal wards.
Special thanks to Prof. Luc Zimmermann, President of the European Society of Paediatric Research, who joined the meeting on Saturday and emphasized the need for collaboration between healthcare professionals and parents.
This year, the third EFCNI awards were handed over to organisations that achieved outstanding achievements for preterm and newborn infants in their countries. The awards were granted to the organisations Fundacji Wczesniak Rodzice-Rodzicomfrom Poland, Ilitominon from Greece and VVOC from Belgium.
We would like to thank every participant for their great invaluable contributions and talks. The meeting is growing every year and we are very happy that we could welcome dear organisations we have been working with for many years and numerous new organisations from all around the world. We greatly appreciated all participants sharing their valuable experience and knowledge, as always it was a pleasure and thrilling to meet so many people fighting for the same cause.
February 2014
10th Parents’ Organisations Meeting
For the tenth time, national parents’ organisations representatives gathered together for three days over the weekend of Valentine’s Day to discuss, share and elaborate on ideas, make new plans and work out strategies.
It was the first time that parents’ organisations joined from several parts of the world with the aim to work together in a strong network and give preterm infants a common voice.
The first meeting day was a chance to recapitulate the big success of World Prematurity Day 2013 and the power of all national activities that contributed to this global movement. We remembered also the beginnings of this awareness day for preterm birth which has its origins in the first ever parents’ organisations meeting back in 2008. At that time during the meeting, on 17 November, one of EFCNI’s founders had a healthy daughter born after he had lost his triplets following preterm birth.
Focus of the meeting were planning World Prematurity Day 2014 and the next big common projects, in particular the EFCNI Standards of Care and the SOCKS FOR LIFE campaigning for the next year.
The French parents’ organisation SOS Préma gave an excellent example of best practice and collaboration between health care professionals and parents in France. The meeting participants also gained insight into the work of new parents’ organisations joining the meeting.
The presentations of external experts of the European Parliamentary Forum on Population and Development (EPF), WHO and PMNCH were certainly the highlights of the meeting.
EPF gave a wonderful insight into the work of EPF to protect sexual and reproductive health of the world’s most vulnerable people in the EU and beyond. Representatives of the World Health Organisation (WHO) and The Partnership of Maternal Newborn & Child Health (PMNCH) introduced the Every Newborn Action Plan: EFCNI, together with all parents’ organisations, will work together to represent the parents’ and patients’ voice in finalizing the Action Plan.
The exchange of experiences and practice revealed the diversity between the countries but also discrepancies in health, care and treatment of mothers and newborns and the challenges parents are facing. All agreed that to overcome these gaps and enable all babies an equal chance for the best possible start in life, implementation of EU wide harmonized standards are essential. The meeting also proved the power of parents’ organisations when they unify and work together.
We would like to thank all motivated parents organisations representatives, experts and speakers for their excellent contribution, ideas, and their engagement and commitment.
January 2013
9th European parents’ organisations meeting held in Freising near Munich, Germany
To kick off the event, there was a talk on the patient involvement in research and health policy around pregnancy which emphasised the importance of involving parents in decision making processes in health care policy, research, prevention and ethics. The Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) reported possible ways to support research in preterm birth and the importance of patient involvement. The World Health Organization (WHO) introduced attendees to the WHO research prioritisation project in maternal health. All parents groups were invited to take part in an online-survey to state their priority research interests.
The parents’ organisations meeting was also taken as a chance to evaluate the last World Prematurity Day (WPD) and organisation representatives showcased their local activities. To round up the meeting the public relations agency Weber Shandwick gave a policy and advocacy communication training which will prove valuable for parents organisations to gain momentum in health politics in their respective countries.
The representatives also elected 8 members into the EFCNI Parents’ Advisory Board. The board members, elected for a period of two years, represent the parents’ voice within EFCNI and will be a valuable source of support and advice.
EFCNI would like to cordially thank all participants and presenters of this meeting for the fruitful discussions and exchange of information and ideas as well as their excellent presentations.
May 2012
8th European parents’ organisations meeting held in Freising near Munich, Germany
In May 2012 EFCNI invited to the 8th European parents’ organisations meeting in Freising. Representatives from 20 European countries and even Canada gathered in order to exchange ideas and experiences, to strengthen the cross border network and to develop joint strategies for newborn health.
The first topic was a conference call with the South African association LittleBigSouls, who gave a short presentation on the difficult situation for preterm babies in Africa and the importance of World Prematurity Day.
Further, EFCNI gave a brief summary on the responses to the global action report on preterm birth “Born Too Soon” which had been supported by EFCNI.
The representatives also discussed in detail common European and global actions for the next World Prematurity Day on 17 November in order to attract high public and media interest for this year’s awareness day.
The parents’ meeting was followed by an inspiring presentation and discussion on how maternal and health care standards can be improved, the importance of having a health care strategy and working in coalitions as well as the appropriate means of communication.
Another highlight was the presentation and workshop given by Weber Shandwick, a leading global public relations agency. In the end the participants could take home valuable ideas and input on how to use healthcare policy trends to build a coalition and how to use the EFCNI White Paper and Call to Action for their national work.
EFCNI would like to cordially thank all participants and presenters of this meeting for their valuable advice and support as well as their excellent presentations.
May 2011
6th European parents’ organisations meeting held in Freising near Munich, Germany
Again, many organisations across Europe followed EFCNI’s invitation to this spring’s parents’ organisations meeting. For the first time, many representatives from the Eastern European countries were able to join the group to exchange ideas and build a cross border network for newborn health. Visitors from Canada and Middle East gained a first insight into the set-up and functioning of the different associations as well as the huge challenges in Europe. They returned home with many ideas for a set-up of their own group.
The 6th parents’ organisations meeting focussed on the opportunities arising from a trustful cooperation between parents and health professionals as well as on the important work of volunteers. Preparations for this year’s joint event on the first World Prematurity Day started and will now accompany us as one main project throughout the next months to come.
EFCNI sincerely thanks all participants for their valuable work and input. Thank you to the presenters of this meeting for their brilliant presentations and inspiring ideas.
November 2010
5th European parents’ organisations meeting held in Freising near Munich, Germany
Fourteen different nations gathered in Freising, Germany, end of November 2010 for the fifth European parents’ organisations meeting to exchange information and to work on next steps in their common fight against prematurity in Europe.
The meeting started with a very interesting and inspiring presentation on the March of Dimes NICU family support system. On this occasion, we would like to warmly thank Judith Gooding, Liza Cooper and Phyllis Williams-Thompson for their time during their Thanksgiving holidays.
Prof. Dr. Jacques Sizun as representative of NIDCAP (Newborn Individualized Developmental Care and Assessment Program) gave a valuable insight into this excellent programme devised for preterm infants in order to ensure their best possible outcome.
Last but not least, Antje Otto from the after care program Bunter Kreis based in Augsburg, Germany, presented an overview on their programme which has meanwhile been adopted by many hospitals throughout Germany.
Another major topic during this parents’ organisations meeting was the decision on the organisation of the next Prematurity Awareness Day which will be held on November 17, 2011 in cooperation with the US-organisation March of Dimes, Little Big Souls from Africa and and the Australian National Premmie Foundation. The representatives agreed on one joint activity all across Europe for this special first World Prematurity Awareness Day. Highlight of this first World Prematurity Awareness Day will be a common meeting and event in Brussels.
The representatives elected seven members into the newly established EFCNI Parents’ Advisory Board. The board members, elected for a period of two years, represent the parents’ voice within EFCNI and will be a valuable souce of support and advice.
November 2009
3rd European parents’ organisations meeting
This third meeting took place end of November 2009 in Brussels, Belgium. Main focus was the preparation of the EU Benchmarking Report and a presentation of possibilities and opportunities to use the data of the report on a national level.
An important highlight of the meeting was a reception at the Bavarian Representation. On this occasion, the 2009 CaPaNi Award was given to Prof. Dr. Mario Rüdiger, Neonatology/Pediatric Intensive Medicine department at the Carl Gustav Carus University Clinic in Dresden, where Prof. Rüdiger and his team conduct research into preventive measures and treatments against chronic lung disease.
May 2009
2nd European parents’ organisations meeting supported by Prof. Dr Angelika Niebler, member of the European Parliament
EFCNI continues its cooperation with 17 European parents’ organisations for preterm infants and newborn infants with illnesses: EFCNI which was founded just one year ago in Munich/Germany, recently held its second European meeting with national parents’ representatives in Freising near Munich following up on the success of the first meeting of European parents’ organisations in Rome in November 2008.
Major topic during the second parents’ organisations meeting from May 1-3 were the preparations for the first Prematurity Awareness Day which will be held on November 17, 2009 in cooperation with the US-organisation March of Dimes and the Australian organisation Austprem.
MEP Prof. Dr Angelika Niebler who at the beginning of the year had received a catalogue of demands drawn up at the first parents’ organisation meeting in Rome, made a visit to the second meeting of European Parents’ Organisations. The parents’ representatives were able to exchange opinions with Dr Niebler about the foundation’s health policy work. “The largest children patient group still receives little support from the EU. I would like to change this and will support the call for more attention to preterm infants and newborn infants with illnesses on a European level”, says Dr Niebler.
November 2008
25 representatives from 18 nations meet in Rome on November 17th/18th
From Sweden to Italy, from Portugal to Turkey, the representatives discussed a joint declaration. There was great unity among the participants at Rome on a number of issues ranging from a European-wide introduction of a prolonged maternity leave for parents of premature babies to the psychological and social care of parents at the neonatal ward and social-medical aftercare for families with preterm infants and newborn infants with illnesses. November 2008 marked the beginning of our pan-European collaboration. During this event, not only the “Declaration of Rome”, ten demands for preterm infants and their families. was compiled and later handed over to politicians of the European Parliament. The groundwork was laid for another milestone: Establishing World Prematurity Day – a now globally acknowledged awareness day.
Day 1
The morning kicked off with a pre-congress workshop led by our Chairwoman, Silke Mader, guiding us through the intricacies of fundraising and industry negotiation. Her expertise set the stage for an exciting afternoon with more food for thought.
After a warm welcome by the Board of Directors, we started the afternoon with an informative talk by Professor Sven Wellmann from University Children‘s Hospital Regensburg (KUNO), Hospital St. Hedwig of the Order of St. John, University of Regensburg, Germany. Professor Sven Wellmann presented the European School of Neonatology (ESN) master programme that equips medical professionals with the knowledge, skills, and attitudes required to practice high-quality neonatal medicine tailored to their local clinical setting. He reminded us of the crucial role education plays in improving neonatal care and how investing today in the doctors and nurses of tomorrow improves care in lasting and powerful ways.
The afternoon closed with three remarkable presentations by partner parent organisations in our network who showcased three recent projects with particular impact in their local communities. “Melletted a Helyem” (“Right(s) beside you”) from Hungary introduced us to “PICAPP”, an app developed especially for preterm families. “PICAPP” provides parents with information and knowledge about preterm birth as well as logging options on the baby’s development. Apart from helping families deal with the trauma of preterm birth in a productive way, healthcare professionals can access relevant data collected by the parents about their tiny patient in one convenient place.
Next, we heard from the Doris Mollel Foundation who initiated “The Right Care” in cooperation with the Tanzanian government which radically improves preterm care in the country. The project facilitates access to healthcare for preterm infants and their families even in remote and rural areas – a significant and impressive leap forward in addressing disparities in neonatal and maternal healthcare in the country.
In the third talk of the afternoon, Lithuanian parent organisation Neišnešiotukas explained how the combined forces of parent organisations, business, and the country’s First Lady had a significant impact on shaping and strengthening the future of healthcare in her country: The world’s smallest and most advanced preterm baby simulator doll, “Paul”, is one of the latest additions to the healthcare system to train neonatology teams in various realistic emergency scenarios, thereby sustainably improving the quality of care for preterm and newborn babies.
Our wonderful presenters
The evening closed with the highly anticipated EFCNI Awards which recognise outstanding efforts by partner parent organisations in the past year. This year’s winners are:
- APREM, Spain, for their “ConTacto” programme which empowers disadvantaged families and provides Kangaroo Mother Care to preterm and hospitalised infants
- ONG Prematuridade, Brazil, for 10 years of outstanding advocacy, education, and training to bring about lasting political, social, and medical change in their country
- Nedoklubko, Czech Republic, for hosting a world-class and high-impact congress which united in an unprecedented manner experts on neonatal and maternal health
The 2024 Awardees
Congratulations to you all! Your commitment and outstanding achievement in improving neonatal and maternal health and care are truly exceptional. We are honoured and thankful to have such inspiring and dedicated parent organisations in our network!
Day 2
The second day of our Parent Organisations Summit began with the presentation “Premature baby, premature family: where does KMC fit in?” by Dr Nathalie Charpak, paediatrician and scientific coordinator of the Kangaroo Mother Care (KMC) Centers of Excellence in Colombia. Apart from presenting scientific proof for the profound impact KMC has on long-term brain development, Dr Charpak also urged the audience to encourage parents in their communities to utilize KMC as early as possible after birth.
Next Prof. Dr Dieter Wolke from the University of Warwick (UK) presented his study on “Long term development after very pre-term birth: potential resiliency factors?”. The presentations stressed the significance of empowering parents through collaboration and offering training right from day one during their hospital stay. Special thanks to both presenters for generously sharing their expertise and for their valuable contributions towards the professionalisation of parent and patient organisations.
After a coffee break, it was time for the EFCNI team to take the stage, share the momentum, and give updates on the most recent projects, including Silke Mader’s announcement of EFCNI going global! This remarkable accomplishment received a standing ovation from the entire audience, and in a moving speech Silke expressed that this step of expanding from a European entity to a global network of parent organisations has long been her dream.
During the afternoon session, five parallel workshops were conducted, led by members of parent organisations and EFCNI team members. These workshops, aimed at empowering parents, covered topics from improving volunteer effectiveness, budget management, to refining pitching skills. Participants had the opportunity to register for workshops most relevant to the growth of their respective organisations.
- Workshop 1: Why your volunteer network is essential and empowering: Investing in your volunteers boosts your impact by Charlotte Bouvard, Audrey Reynauld, and Vincent Desdoit. The parent organization members from SOS Préma, France offered insights into their experiences with effectively engaging and overseeing over 125 volunteers across 85 local branches and invited the workshop participants to also share their know-how.
- Workshop 2: The European Standards of Care for Newborn Health (ESCNH) by Isabel Geiger (EFCNI) and Professor Luc Zimmermann. By targeting the specific needs of the participants based on their level of expertise, the workshop served as motivation for the local implementation process of the standards.
- Workshop 3: Budget preparation for projects in which Nicole Thiele (EFCNI) expressed the importance of thoroughly outlining all anticipated expenses, ensuring that the budget remains realistic and achievable. Additionally, she highlighted the importance of consistently reviewing and adjusting the budget throughout the project’s lifecycle.
- Workshop 4: Raising awareness via social media within the EFCNI network by Catherina Witte and Dr Christina Tischer (EFCNI). In this interactive and engaging workshop fundamental points were presented and discussed, such as the importance of storytelling and compelling content in audience engagement, as well as interactive features and shareable visuals to amplify the message and reach a broader audience effectively.
- Workshop 5: The perfect pitch: presenting your business ideas to another party by Silke Mader and Aurelia Abenstein (EFCNI). The focus was on how to create a concise and compelling narrative that effectively communicates a business idea, as well as the importance of highlighting the unique value proposition and potential impact.
After the various educational presentations and workshops on the second day in Freising, the evening concluded with a delightful dinner party, providing an opportunity for all participants to foster deeper connections and enjoy each other’s company.
Day 3
The third and last day of the Parent Organisations Summit 2024 kicked off with further parent organisation presentations. In response to feedback we received following last year’s summit, it is clear that there is a huge benefit from the exchange between parent organisations’ experiences therefore this year we put more focus on peer-to-peer learning experiences.
Alicia Flórez Garabito from APREM (Spain) shared the ConTacto Programme which has gained recognition from various health organizations for its effectiveness in assisting preterm babies who face not only medical but also social or economic vulnerability, placing them in a category of “double risk” infants. The program serves to improve quality of life for them through supporting the families at the hospital and after discharge.
Next, we heard a presentation on the topic of “Involving the healthcare network during times of a crisis”. We delved into essential strategies and practices that have proven instrumental in maintaining organizational focus, efficiency, and resilience amidst challenging circumstances including wars. Oleksandra Balyasna from Early Birds shared her experiences from Ukraine. Despite facing hurdles like their sponsors cancelling funds because of the start of the war in February 2022, they carry on with their work to support preterm babies and their families as well as organising events and conferences with more than 1000 participants.
In the following, Yamile Jackson from The Zaky (USA) shared her inspiring and moving story, which started with her own pregnancy 23 years ago. The Zaky, ignited by her son’s, Zachary’s journey, is dedicated to enriching the lives of babies and families through engineering excellence and best practices. She discussed how aligning purpose with project development can ignite profound impact and usher in transformative changes in NICU outcomes.
Last but not least, we had the opportunity to listen to Kateregga Bazilio from Preterm Infants Parents Network Uganda: “Follow up of preterm babies at home using the Village Kangaroo Ambassador Model”. The learnings from the projects were manifold, including the creation of a health education book and a comprehensive home care plan. Furthermore, they learned that celebrating the discharge of preterm babies from the NICU to the kangaroo room or to home has been a source of hope to parents still in the NICU.
A huge thank goes to all our presenters for sharing their respective stories and achievements and inspiring us all!
Closing statement
The POS is not just about expanding your network of support and like-minded people. We also want to learn from each other and empower each other. EFCNI wants to contribute to professionalising parent- and patient organisations and to support them in their work as NGOs and in the exchange with medical professionals or political decision-makers.
