🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Do you work in Health and Social Care and are you looking to undertake a PhD level fellowship? If so, NHS England/National Institute for Health and Care Research Pre-Doctoral Bridging Scheme could be for you! For more information and to apply, visit: research.hscni.net/pre-doctoral-b… Closing date: 2 May 2025 at 5pm.

Calling the NI rare disease community! What's your experience getting meds for a rare disease? Clinical trials? Home nurse visits? Share YOUR feedback via this short survey to shape future!  surveymonkey.com/r/92S2CNM  #RareDiseasesNI #HealthReview #PatientVoice #NIdoh

How can knowledge graphs inform us on the complex networks involved in rare diseases? 🤔 Join the #ERDERA Rare Disease Maps Workshop. 👉 📅 6–7 May | 15:00–17:00 CEST 🔗 Register day 1: loom.ly/FbDXOYM 🔗 Register day 2: loom.ly/6g90KSk

The Education Authority has apologised to the family of a teenager who has not been to school for a year and a half. The boy's mother says the family have felt "abandoned". bbc.in/4cGGPFj

Have you visited our Mentally Healthy Schools website? The site hosts over 300 resources from sector leading organisations for primary, secondary, and further education settings. Check out the site: orlo.uk/AWTyj

Visit the official online directory for family services and childcare across Northern Ireland - save it to your favourites now 👇👇👇

Paw-sitively brilliant day at the Teddy Bear Hospital in Derry~Londonderry! 🧸 Huge thanks to @UU_GMS students & Altnagelvin Parents Group for this heartwarming event, easing little ones' fears of healthcare. Much joy and learning! #TeddyBearHospital #ChildHealth #HealthcareHero

Living with a rare disease in Northern Ireland? Our Virtual Support Hub offers info, support & guidance. Connect with us via the link in our bio or by clicking : forms.gle/wPAvCyZgeY26ps… #RareDiseaseNI #SupportHub

It's #UndiagnosedChildrensDay! 🥳 🤩 Having a child with an #undiagnosed #genetic condition is lonely and isolating, with families having more questions than answers about what the future holds. Please share this post to help more families find SWAN UK! ow.ly/kuGJ50VHzPz

Thinking of the incredible families in NI on Undiagnosed Children's Day. @NIRDP is here for you, alongside SWAN UK (syndromes without a name), advocating for support, research, and amplifying voices. If you're a parent in NI, we want to hear your story link in bio to reach out to our support hub.

🧬 Today, April 25th, is #DNADay! This date marks the anniversary of the completion of the Human Genome Project in 2003 and the discovery of the double helix structure of #DNA in 1953. DNA and #rarediseases are closely linked 👇

💔Heartbroken dad says daughter's rare cancer diagnosis 'hit like a ton of bricks. The only time I can process it is when I'm alone.' 🏨Two-year-old twin girl Myla from Castledawson was diagnosed with an aggressive and rare bone cancer known as Ewing's Sarcoma. 🎤Her dad,

Take a sneak peak at this clip from one of our new animations ... launching soon! #UCD2025 #UndiagnosedChildrensDay #SyndromeWithoutAName

Today I opened the Helplines NI conf at Girdwood, celebrating the work of helplines. I spoke about a constituent who got one bad piece of advice, given by a friend, which resulted in benefit cuts & sanctions, & how valuable the support of helplines were in righting those wrongs.

Calling NI & ROI rare disease families! UCD Research is studying the social & economic impact. Your voice is vital for better support & policies. Take ~30 min survey .Link in Bio #RareDiseasesNI #Research #FamilySupport

👩‍👧 Raising a child with a #raredisease? Help researchers understand the financial & social impact of rare diseases on families in Ireland. We’re still looking for 234 more responses! 📝 Survey takes just 30 minutes! 🔗 tinyurl.com/bdhwd2az #PatientAdvocacy #ParentVoices

The latest version of Western Trust area FYI newsletter is now available - it is a monthly round up packed full of information on all things family support & early intervention prevention across the Western Trust area & beyond - download your copy 🔗 cypsp.hscni.net/download/415/w…

Stormont passed a motion in favour of respite for disabled children & adults, funding was announced to restore the service yet Lilia's short-break respite remains cancelled. If Stormont can't deliver on this agreed & funded small-scale issue what can they deliver on? #CarersWeek

“This research study which has discovered two new frequent causes of neurodevelopmental conditions is incredibly important and valuable to patients and families, who have often been searching for a long time for the answer to their child’s developmental delays." - Sarah Wynn