Other content tagged: parent organisation
“SOS Préma” empowers healthcare providers with parental insights at 15th annual training days
10-11 October saw 340 healthcare professionals gather in France for SOS Préma’s 15th annual training days, a pivotal event offering an empathetic view into the realities faced by families of preterm infants. Each year, “SOS Préma”, our valued partner in France, hosts training sessions to deepen the understanding of healthcare providers around the unique challenges encountered by preterm infants and their families. Established in 2011, these events now bring together hundreds of healthcare professionals, all committed to improving neonatal care.…
Read more
Advanced Policy and Advocacy Workshop on RSV 2.0 in Munich
From 12 to 15 September 2024, parent and patient representatives from 18 countries across 2 continents came together to exchange knowledge and learn about effective policy and advocacy activities, using RSV in young children as a case study. It was a pleasure for EFCNI to host this workshop on RSV policy and advocacy in Munich. The four days were packed with practical exercises, engaging group discussions, and workshops aimed at helping participants develop new or enhance existing tools and skills…
Read more
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
