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

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/

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. Share your voice! 🎥 Watch short video shorturl.at/3zmru 👉Take part in the SURVEY tinyurl.com/bdhwd2az