For parents of a baby born too early, the first weeks in the neonatal unit can feel overwhelming. There is so much to take in, and often very little time or energy to take it in.
That is why we are proud to announce a new collaboration with the Global Foundation for the Care of Newborn Infants (GFCNI), a patient organisation that puts the voices of parents at the centre of its work. Together, we want to improve access to reliable, understandable information for families of babies born preterm.
A new section on retinopathy of prematurity
On World Sight Day, we are launching the first activity of our collaboration: a new section on retinopathy of prematurity (ROP) on Neopedia, GFCNI’s global information platform for parents.
ROP is an eye condition that can develop when a baby is born before the blood vessels and nerve cells of the retina have finished growing. Babies born before 31 weeks of pregnancy, or weighing less than 1,250 grams, are at highest risk. Many parents first hear about ROP in the neonatal unit, at an already stressful time.
In clear, non-technical language, the new section explains:
- what ROP is and which babies are most at risk
- what happens during an eye examination
- the role of the fatty acids DHA and ARA in the development of a baby’s eyes
- why follow-up eye appointments after discharge are important
ROP can sometimes resolve on its own, but when treatment is needed, finding it early gives a baby the best chance of healthy vision. That is why regular eye checks, in hospital and after discharge, matter so much.
The content was reviewed by Professor Ann Hellström, Professor of Pediatric Ophthalmology at the Sahlgrenska Academy, University of Gothenburg. It is available in English now and will be published in all Neopedia languages.
Why this matters to us
“For parents of a baby born too early, everything can feel overwhelming, and many first hear about retinopathy of prematurity in the neonatal unit, when there is already so much to take in,” says Dr Stefan Johansson, co-founder and Chief Medical Officer of Neobiomics. “Through the ROP section at Neopedia, we hope to offer families clear, reassuring information, so they feel less alone and more confident in caring for their baby’s eyes, including regular checks after they go home.”
Annika Wülfing, Strategic Medical Affairs Lead at Neobiomics, adds:
“Every family of a preterm baby deserves reliable, understandable information. We are proud to start this collaboration with GFCNI, an organisation that puts parents’ voices at the centre. ROP is a natural first step: when parents learn about it early, they can ask the right questions and keep every follow-up appointment.”
What’s next
The collaboration continues on 22 October, when GFCNI will give a talk at our Neobiomics webinar on the lived experience of ROP, from the perspective of parents and affected individuals.
You can find the new ROP section on Neopedia under Pregnancy & Birth, Possible Complications, Eye.
Content about ROP on Neopedia was developed with the support of Neobiomics. GFCNI retains full editorial responsibility for all Neopedia content. The Neopedia platform is unconditionally supported by Chiesi.
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