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2nd edition | May 2019

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Dear friends and supporters of EFCNI,

Half a year ago, we launched the European Standards of Care for Newborn Health in Brussels. Many activities to push the standards forward have been taking place since then. Find out more about this and other news, like the EFCNI Academy workshops in 2019. 

Enjoy reading the newsletter!

Your EFCNI Team

EFCNI

EFCNI PARTICIPATES IN 2ND GLOBAL FORUM IN LONDON

Discussing the consequences of economic crisis on women’s and children’s health

In April, EFCNI Chair Silke Mader joined the 2nd Global Forum on Economic Crisis, Women’s Health and DOHaD Consequences in London. She outlined how the social and economic crisis weighs on patients and families affected by preterm birth or by the death of mothers or babies.

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Act early! Screen early!

May is dedicated to our new pre-eclampsia awareness campaign

May is Pre-eclampsia Awareness Month and 22 May is World Pre-eclampsia Day. We launched our new, international awareness campaign Act Early! Screen Early! to join forces with affected women and medical experts around the world.

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EFCNI on site

EFCNI at the 2nd World Congress on Maternal Fetal and Neonatal Medicine in London

Too early for Baby Sussex but in time for the 2nd World Congress on Maternal Fetal and Neonatal Medicine: For the second time, EFCNI participated at this biennial international congress, located at the stunning Queen Elizabeth II Congress Centre, right in the heart of London.

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FOCUS ON STANDARDS AND EFCNI ACADEMY

45th GNPI congress in Leipzig

EFCNI Chair Silke Mader and Vice Chair Nicole Thiele participated in the GNPI congress in Leipzig, Germany. Next to sessions on discharge management for preterm babies and about the European Standards of Care for Newborn Health, they presented the workshop programme of the EFCNI Academy 2019 to the scientific community.

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KICK-OFF AT GNPI CONGRESS IN LEIPZIG

A Strong Start for little Heroes – volume 4

At the GNPI congress in Leipzig, EFCNI also celebrated the kick-off for A Strong Start for little Heroes 2019. For the fourth time, neonatal intensive care units in Germany, Austria, and Switzerland will receive an action package to support their events on World Prematurity Day on 17 November.

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World Hand Hygiene Day

Ellerini yikamak kolaydir - "Wash your hands - it's easy" goes international

Thorough handwashing is an easy and fast health measure. Our campaign “Wash your hands - it’s easy” explains the sustainable benefits of handwashing to toddler, kids and teens in a fun way.

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WELCOME TO OUR NEW COLLEAGUE

EFCNI expands its Scientific Affairs Department

A warm welcome to Dr Silvia Kolossa who joined EFCNI’s scientific team as a Senior Project Manager for Maternal and Newborn Health in April. Silvia brings a lot of expertise in nutrition and health sciences, e.g. from the European “Food4Me” study and from a nutritional intervention study with partners in Benin, West Africa.

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Empower Parents – Enable Breastfeeding

EFCNI supports World Breastfeeding Week 2019 – join us

To support this year’s World Breastfeeding Week (WBW), EFCNI is reaching out to healthcare experts AND mothers as well as their partners with a survey, asking for your experiences, advice, challenges and wants in regards to breastfeeding. The results of the survey will be evaluated and shared during WBW (1-7 August 2019).

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Standards of Care for Small and Sick Newborns

EFCNI participates in WHO technical meeting

To benefit from expert input in order to finalise the report on Transforming Care for Every Small and Sick Newborn, the World Health Organization (WHO) has hosted a three-day technical meeting in April on Standards of Care for Small and Sick Newborns in Geneva, Switzerland.

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3RD CONGRESS OF JOINT EUROPEAN NEONATAL SOCIETIES

Joining efforts for a unique event in the field of neonatology

In their Welcome Address, the European Society for Paediatric Research (ESPR), the Union of European Neonatal and Perinatal Societies (UENPS), and EFCNI warmly invite visitors to the jENS congress in Maastricht, the Netherlands, in autumn 2019.

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CONGRESSES AND CONFERENCES

Meet EFCNI at these events in 2019

EFCNI will participate in a number of meetings, conferences, and congresses in 2019 and will be co-organiser of the 3rd Congress of joint European Neonatal Societies (jENS) in Maastricht. On our website we provide a detailed overview on all important neonatology events and marked those where you can meet EFCNI.

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Network

NEW BOOK “A TINY LITTLE ONE” BY KEVYT

30 stories by professionals and families of children born preterm

The Finnish Association for Preemie Families, Kevyt, has published a book called Kevyt Pienokainen (“A tiny little one”). The book is directed at parents of preterm children, families, friends, and relatives.

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MUSIC FOR PARENTS WITH BABIES IN THE NICU

Italian partner organisation Vivere Onlus features Italian and English song

When a baby is born too soon or ill, parents often feel overwhelmed and anxious. The song “io ti aspetto lo stesso” reflects the feelings of the mother and the hope for the future of her child. The song is now also available in English and is called: “I just wait for your life”. You can listen to both songs online.

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FOLLOW-UP FOR PRETERM CHILDREN IN ROMANIA

First Romanian follow-up centre for preterm children

In 2018, Asociatia Prematurilor opened a Centre of Excellence in Prematurity in Bucharest, featuring free interdisciplinary evaluation services for preterm babies and their families. The beneficiaries come from all over the country to reach psychologists, neonatologists, experienced therapists or nutritionists.

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BABY, PARENT AND FAMILY CENTRES

Asociatia Prematurilor visits hospitals in Munich and Passau

In April, Diana Gamulescu and Adina Clapa from our partner organisation Asociatia Prematurilor from Romania visited the Baby, Parent and Family Centres at the hospitals Klinikum Dritter Orden in Munich and Kinderklinik Dritter Orden Passau together with our Chairwoman Silke Mader. The facilities are especially designed for families whose babies require neonatal intensive care for a longer period of time.

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MENTAL HEALTH WORKSHOP FOR PARENTS AT THE NICU

Psychological workshop and training for parents of preterm babies in Turkey

Ilknur Okay from our Turkish partner parent organisation El Bebek gül Bebek conducted a psychological training to improve mental wellbeing of parents with babies in the neonatal intensive care unit. This workshop took place in 16 hospitals in five cities across Turkey.

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Happy anniversary TinyLife!

Our partner organisation from Northern Ireland turned 30

„We may be Tiny but we aim to make a big impression.“ Our heartfelt congrats to TinyLife, our partner organisation from Northern Ireland, for 30 years of committed and sustainable support for preterm babies and their families.

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Neonatal Mental Health Awareness Week

Campaign for mental health support for parents and families of preterm and ill babies

The Neonatal Mental Health Awareness Week from 15-21 April is a new momentum to raise awareness for the impact on mental health that a stay at the neonatal intensive care unit (NICU) has on the families of preterm or ill born babies. Founded by Leo’s Neonatal, the aim is to campaign for mental health support for everyone involved in the neonatal pathway.

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Survive and Thrive

Big panel discussion on global report at WHO World Health Assembly

The global report “Survive and Thrive; Transforming care for small and sick newborns” was presented on a panel at the 72nd World Health Organization (WHO) World Health Assembly on 23 May in Geneva. EFCNI was represented by Parent Advisory Board member Livia Nagy Bonnard.

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Science

NEW E-LEARNING RESOURCE

Preterm birth information for education professionals

Professor Samantha Johnson and the PRISM Study team developed a new free e-learning resource for teachers to help explain the impact being born preterm can have on a child’s development and learning, as well as practical ways teachers can support them at school.

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PRETERM BIRTHS AND END-OF-LIFE DECISIONS

EFCNI shares parental view in publication by Frontiers in Pediatrics

Frontiers in Pediatrics released a new publication on “Ethical, Legal, and Religious Aspects at the Border of Viability”. Representing affected patients and their families, EFCNI Chair Silke Mader was one of the authors of this article that sheds light on ethical, legal, and religious consideration in ethical-decision making processes in clinical care of preterm infants.

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VERY PRETERM BABIES

Large differences in the use of specialist health services in different European countries

Very preterm babies suffer more frequently from various impairments, such as motor, hearing, vision and cognitive impairments, compared to term babies. New research shows large differences in specialist health services within Europe.

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COHORTS OF THE EPICURE STUDIES

Series on cohorts of RECAP preterm – part 2

In our new series about cohorts of the EU-funded project „Research on European Children and Adults born Preterm“ (RECAP preterm), we recently reported about the ESTONIA I & II cohorts. We are happy to present you a second example, the cohorts of the EPICure studies in the United Kingdom and Ireland.

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FEEDBACK WANTED

EMA drafts guideline for medicinal products containing genetically modified cells

The European Medicines Agency has released a draft guideline on quality, non-clinical and clinical aspects of medicinal products containing genetically modified cells for public consultation.

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NEWS FROM THE EUROPEAN COMMISSION

Updated version of EU Register of medicinal products now available

The European Commission launched a new version of its Union Register of medicinal products, listing all medicinal products authorised by the Commission, in total over 1,300 medicines.

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European Standards of Care for Newborn Health

STANDARDS FEATURED IN THE LANCET

Infant- and family-centred developmental care in the NICU

We are delighted to see that the European Standards of Care for Newborn Health and some of the experts who contributed to the development of the standards have been featured in a new publication by The Lancet Child & Adolescent Health on “Family-centred care in the NICU”.

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WORKING ON THE INTERNATIONAL IMPLEMENTATION

Standards presented in Brussels and Kiev

The international ‚roadshow‘ about the European Standards of Care for Newborn Health is in full swing. In May, Dr Johanna Walz from EFCNI presented the standards at the NIDCAP meeting in Brussels, Belgium, and at an Expert Meeting and a Neonatology Conference in Kiev, Ukraine.

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11 MONTHS – 11 TOPICS (APRIL)

Follow-up and continuing care

Within our campaign 11 Months – 11 Topics, we took a closer look at the standards in the field of follow-up and continuing care in the month of April. Amongst others, we presented a new series about the cohorts of the Research on European Children and Adults born Preterm (RECAP preterm) project.

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11 MONTHS – 11 TOPICS (MAY)

NICU design

The design of neonatal intensive care units, shortly called NICU design, was our focus topic in May. Get an update on news in this field, like a report about the visit at the hospitals of “Kliniken Dritter Orden gGmbH” in Munich and Passau.

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MEETING OF NEDOKLUBKO COORDINATORS

Towards the implementation of the standards in the Czech Republic

In April 2019, 20 coordinators of our partner organisation Nedoklubko from the Czech Republic came together for an intense working meeting in Škvorec/Prague. The team defined key steps regarding the implementation of the European Standards of Care for Newborn Health in the Czech Republic.

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