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Patient and parent advocacy
As members of many PPAB's we advocate for the right to the best start in life for newborn infants.
Zero Separation & KMC
Kangaroo Mother Care, short KMC, is a neonatal care practice which benefits all newborns but particularly those born preterm, with low birth-weight, or in need of immediate medical attention.
The WHO defines the practice as including the following key features5:
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continuous and prolonged (8–24 hours per day, for as many hours as possible) skin-to-skin contact, initiated immediately after birth
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exclusive breastfeeding or breastmilk feeding
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when KMC is initiated in healthcare facilities, timely discharge either from the NICU to a lower level of care within the facility or discharge to home (with skin-to-skin contact and close monitoring)
Extreme Prematurity Ethics Committee
As association we represent the voice of parents and prematures in the evaluation of medical practises and ethical considerations regarding recommendations of gestational age for resuscitation and palliative care.
Medical Innovations Comittees
We represent the voice of parents and patients in many advisory boards for medical and/or therapeutic innovations.
Some examples:
RSV advocacy workgroup
End Obesity Project European Union
European Medicine Agency
Non disclosed innovations
European Standards of Care for Newborn Health
The European Standards of Care for Newborn Health (ESCNH) are an interdisciplinary European collaboration to develop and update standards of care for key topics in newborn health. It brings together more than 220 healthcare professionals of different professions, parent representatives and selected industry specialists from over 30 countries. The ESCNH focus on the treatment and care of preterm and ill newborn babies from hospital to school age.
