Other content tagged: parent organisation
Stronger together: Main Belgian associations launch the Zero Separation Coalition
Guest article by Michel Collart, Noah's Ark Belgium. Extra boost in May: Noah’s Ark Belgium convinced partner associations VVOC, Cokoen and Odisee to promote Zero Separation. Mid-May the coalition held the Zero Separation Tour Belgium featuring 3 conferences with Nils Bergman in 3 major NICUs (Antwerp, Leuven & Genk). Over 200 neonatal professionals attended the “Nurturescience a case for Zero Separation” conference. In Leuven we had the chance to host Mrs. Bieke Verlinden representing the Minister of Health and Mr. Els…
Read more
NGO Prematuridade.com lauches a National Intersectoral Plan dedicated to the cause of prematurity in Brazil
Guest article by Denise Suguitani, founder and Executive Director of ONG Prematuridade, our partner parent organisation in Brazil. In the year in which it celebrates ten years of work in favour of the cause of prematurity, the Brazilian Parents of Preemies’ Association (NGO Prematuridade.com) launches an initiative inspired by the strength of the families of these babies and the sensitivity of professionals working in neonatology: the National Intersectoral Plan for Prematurity (PNIAP, as…
Read more
Making skin-to-skin care a reality for families in need with “ConTact”
Guest article by Professor Concepción Gómez Esteban, Universidad Complutense, Madrid, Spain, and President of APREM, one of EFCNI’s esteemed partner parent organisations in Spain. In 2022, APREM initiated an innovative programme in Spain called “ConTact”, aimed at facilitating skin-to-skin care between preterm infants and their families as well as supporting those families when going back home. We focused particularly on the most vulnerable tiny patients, namely preterm babies who, in addition to medical challenges,…
Read more
Putting the preterm infant in the centre of all care: Impressions from Erasmus Hospital, Brussels
Guest article by Lívia Nagy Bonnard, founding member of “Melletted a helyem Egyesület” – “Right(s) Beside You Association” in English – and a member of the Parent, Patient and Public Advisory Board of the European Standards of Care for Newborn Health (ESCNH). During each NICU visit, I think to myself, “If my son had been treated here, in this ward, as an extremely preterm baby, how different – or better – would my NICU experience have been? Would there have…
Read more
Angels for parents with empty arms
Guest article by Veronika Kmetóny Gazdová of our Slovakian partner from parent organisation Malíček. Preterm birth is a risk for both the woman and the baby. The fragility of life is seen especially in those families whose are leaving the hospital with empty arms. Malíček initiated a project to commemorate those lives as well as support families in their grief. Malíček donates the memorial called “little angels” to perinatal centres across Slovakia. The project builds on the activities of…
Read more
Transitional care in focus: Considering the needs of preterm babies and their families
Guest article by Lívia Nagy Bonnard, founding member of “Melletted a helyem Egyesület” – “Right(s) Beside You Association” in English – and a member of the Parent Advisory Board of EFCNI as well as a member of the Parent, Patient and Public Advisory Board of the ESCNH. 30th United European Gastroenterology Conference in Vienna The 30th United European Gastroenterology Conference took place in Vienna at the beginning of October 2022. The aim of the conference was to discuss and share research…
Read more
New parent organisation aboard – Welcome, “EDEN Foundation”, to the EFCNI network!
We are happy to welcome a new parent organisation as partner and friend to our network: The “EDEN Foundation” from Nigeria! The “EDEN Foundation” is a registered non-profit, non-governmental organisation and was established in 2019. Founder Kobi Ajayi went through pregnancy loss as well as a preterm birth herself and had to learn how to cope with the physical and psychological tolls of these experiences. Realising that she was not…
Read more
EUPATI welcomes a new fellow: congrats to Livia Nagy
The European Patients’ Academy (EUPATI) was established in 2012 as a pan-European project. It is a programme that provides education and training to patients and patient representatives to increase their capacity and capability to understand and meaningfully contribute to medicines research and development (R&D), and to improve the availability of medical information for patients and other stakeholders. It does so by conducting its established Patient Expert Training Programme which has, until…
Read more
FINE trainings in Hungary: How to train medical staff in times of a pandemic
A guest article by Livia Nagy Every year more than 8,000 newborns begin their lives in premature intensive care units of different levels in Hungary. The pillars of family-centred care are absent from numerous units, one of the most significant of these being the lack of opportunities for the 24-hour presence of parents and their involvement in the care of their children. In 2019 the Government of Hungary set family-friendly values and the implementation of family and child-friendly approaches as…
Read more
“Stay close to your parents” – how a German association supports parents of preterm babies in times of pandemic
The association "Das frühgeborene Kind" e.V. with its nationwide network of self-help initiatives and counselling centres for families with preterm born infants is a contact and placement centre in Germany for all who need help and information regarding preterm births. In an interview with EFCNI Katrin Eglin, spokeswoman of "Das frühgeborene Kind" e.V., explains how the association is involved in the times of COVID-19 Mrs Eglin, exchanging knowledge and sharing experience are always important but even more so in times…
Read more
