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Other content tagged: news

Guaranteed by the state: Empowering families to know and exercise their rights

Guest article by Oleksandra Balyasna, Head of  partner parent organisation "Early Birds" in Ukraine and member of the EFCNI Parent and Patient Advisory Board. Knowing your rights guaranteed and provided by the State can decrease the stress among parents of preterm babies and improve health outcomes for both mothers and newborns. Questions to think about for every parent organisation: Does your patient network know their rights and where to check this information? Do you know what to do when your…
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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,…
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Neonatal care through the ages: The impressive journey of infant and family-centred developmental care in Denmark

A guest article by Sarah Fügenschuh When we imagine modern neonatal care, in industrialised nations in particular, we might think of Neonatal Intensive Care Units (NICUs) equipped with state-of-the-art technical and medical appliances, the involvement of parents in the care of their hospitalised child, Kangaroo Mother Care, patient-centred treatment and follow-up care, and a relationship between healthcare professionals and parents at eye level. If one were to imagine a NICU in Denmark to be like this, one would not be…
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Development of a WHO Core Outcome Set (COS) for maternal and perinatal health for the next epidemic or pandemic: involvement of EFCNI in the process

EFCNI contributes to efforts by the World Health Organization (WHO) to develop a Core Outcome Set (COS) for maternal and perinatal health in anticipation of future epidemics or pandemics. Joining an international expert group, led by EFCNI Chairwoman Silke Mader, we advocate for considering and incorporating crucial patient perspectives. Maternal and perinatal health are often directly and indirectly affected during outbreaks of infectious diseases. The consequences can be dire. Women and their families face uncertainty and confusion as access to…
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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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Know the facts in a world full of infectious respiratory viruses

  Explore our corporate partner AstraZeneca's new one-stop web resource for respiratory virus knowledge and try the symptom comparator right away. It's that time of year again when coughs and colds are ubiquitous. But is it possible to have several respiratory diseases at the same time? Indeed, this phenomenon is known as coinfection although it is relatively rare due to the competition between the viruses during infection.[1-3] While infrequent, the consequences of coinfection may…
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Celebrating World Prematurity Day 2023 – with a congress and an award

Guest article by Lucie Žáčková, Chairwoman and Executive Director of parent organisation Nedoklubko in the Czech Republic.   World Prematurity Day was first celebrated in the Czech Republic in 2010. This year marked the 13th anniversary of the event – and the first time after a three-year break that we could finally meet again in person, share experiences, and swap stories.   Nedoklubko’s first congress The team of Nedoklubko, the Czech patient and parent organisation, decided to organise a special…
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Putting the needs of preterm babies on the political agenda in Romania

Guest article by Diana Gamulescu, Co-founder and President of Asociatia Prematurilor in Romania. Preterm birth as health challenge in Romania In Romania, over 20,000 babies are born preterm each year, i.e. about 10% of all births. Experts recognise the major challenges preterm births pose for public health and the neonatal system in the country. Risks associated with being born too soon include an increased mortality rate and severe disability. In addition, many of these children experience neurodevelopmental difficulties, such as…
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Spenden statt Geschenke

Europaabgeordnete Angelika Niebler unterstützt SAVE-Projekt am LMU Klinikum (see English translation below) „Geben ist seliger denn Nehmen“ – so kann man die großzügige und großherzige Tat überschreiben, die der Neonatologie…
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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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