Suja Somanadhan
@sujas.bsky.social
Associate Dean of Global Engagement| Associate Professor #UCDSNMHS #UCD # Dublin #Ireland #Researcher #Paediatric Nursing #Rare Diseases #PCOM #PREM #Child Health #Family Health
Reposted by 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
#HealthResearchMatters
May 30, 2025 at 8:39 AM
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
#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/
pubmed.ncbi.nlm.nih.gov/39837019/
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...
pubmed.ncbi.nlm.nih.gov
April 23, 2025 at 9:39 PM
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/
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
Share your voice!
🎥 Watch short video shorturl.at/3zmru
👉Take part in the SURVEY tinyurl.com/bdhwd2az
April 22, 2025 at 6:18 PM
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
Share your voice!
🎥 Watch short video shorturl.at/3zmru
👉Take part in the SURVEY tinyurl.com/bdhwd2az
April 22, 2025 at 6:15 PM
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
Share your voice!
🎥 Watch short video shorturl.at/3zmru
👉Take part in the SURVEY tinyurl.com/bdhwd2az