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Other content tagged: parent organisation

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…
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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…
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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…
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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…
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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…
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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…
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“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…
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New parent organisation in our network – A warm welcome to Preemie Connect

A warm welcome to Preemie Connect, a new parent organisation that joined our network! Preemie connect is founded and run by Tasmin Bota, the mother of a baby born preterm in South Africa. Together with EFCNI’s and GLANCE’s long-term partner the African Foundation for Premature Babies and Neonatal Care (AFPNC) she hosted her first event for World Prematurity Day in 2018 and has been advocating for parental involvement since then. “Hosting that event allowed me to see just how many…
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Virtual Education sessions for parents: An interview with Fabiana Bacchini

We interviewed Fabiana Bacchini from the parent organisation Canadian Premature Babies Foundation (CPBF) on their Virtual Education sessions, which include interviews with experts on topics regarding COVID-19 and prematurity, and their new COVIDCare program which offers two free counselling sessions to new parents in need.   Exchanging knowledge and sharing experience are always important but even more so in times of COVID-19. What do you offer to support your parent network in terms of exchange and support…
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NeonaTEL: A call centre for parental support during the COVID-19 pandemic, established by the Romanian parent organisation Unu si Unu

Due to the COVID-19 pandemic parents are in need of special support. They have questions which should be answered on daily basis. EFCNIs partner parent organisation Unu si Unu established a call center to stay in touch with parents and parents-to-be and to help them to stay healthy and close to their children in the time of COVID-19. Corina Croitoru from Asociația Unu si Unu in Romania explained how the Call Center works and what is needed to set it up.…
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