Suja Somanadhan

There's great momentum around patient registries right now! The FoRT report, Sustaining Patient Registries in Ireland, calls for a bold, Dept of Health-backed vision for their future. A vital roadmap for care, research & policy. Worth a read 👉 cfri.ie/wp-content/u...

#HealthResearchMatters

Enjoy your time at the University Malta 🇲🇹 @ucddublin.bsky.social @ucdglobal.bsky.social @euerasmusplus.bsky.social

Assessing the supportive care needs of parents of children with rare diseases in Ireland - PubMed This study underscores the urgent need for comprehensive support systems to alleviate these burdens, advocating for tailored healthcare and social support interventions to meet the diverse needs of th...

Assessing the supportive care needs of parents of children with rare diseases in Ireland -This descriptive quantitative study employed survey techniques to assess parental support needs @rarediseasectn.bsky.social @rarediseasesint.bsky.social @eurordis.bsky.social
pubmed.ncbi.nlm.nih.gov/39837019/

Congratulations John and team! Well done for securing this prestigious award 👏

Please share this with others who may be eligible — every story matters. #RareDisorders #Rarediseases @rarediseasesint.bsky.social @hrci.bsky.social @rareireland.bsky.social

Caring for a child with a #RareDisease comes with #financial, #social, and #emotional challenges. We want to understand your experience to create positive change.
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