Genomics can be explained through a simple metaphor that each one of us is a unique book filled with pages that describe why we are the way we are. #Genomics is the study of these pages.📖 It’s how we can use our diversity to improve our future.

A wonderful short video for all rare parents in Ireland RARE Ireland & around the world EURORDIS-Rare Diseases Europe RDI. Simple message will help you to manage & bring a smile to your face. #YouAreNotAlone ❤️❤️❤️ Video refers to 22Q but we can all learn from and embrace the sentiment

The beautiful Iamnumber17.ie exhibition is on in the Orbsen building until the end of July. Did you know that 1 in 17 people will be affected by rare disease at some point in their life? Come and get to know the inspiring stories of the 17 change makers RARE Ireland

New study reveals sweet and brave stories from Irish children living with rare conditions sundayworld.com/lifestyle/real… Sunday World RAiN UCD School of Nursing, Midwifery & Health Systems RARE Ireland Rare Diseases Ireland

Productive meeting with EURORDIS-Rare Diseases Europe. I thanked them for their cooperation and strong support to build an 🇪🇺 #HealthUnion over the last few years with key legislstive initiatives. We will continue working closely in the next months to support patients living with rare diseases.

The deadline to submit to rare disease public consultation is end July. If you are: Living with a rare disease Family member Caring for someone with a rare disease Healthcare provider Healthcare manager Allied health professional Innovator Researcher Industry PLEASE CONTRIBUTE!

Many neurological conditions are also rare diseases. Please take the opportunity to complete this survey with Neurological Alliance of Ireland and partners across UK. Make your voice heard!

🎉 Exciting news! The 2024 RDCTN Seed Funding Award deadline has been extended to Friday, 23rd August! Showcase your innovative #raredisease research by developing novel methodologies, optimising clinical trials, or exploring proof of concept studies! rarediseaseresearch.ie/funding-opport…

Deadline to contribute to National Rare Disease Strategy extended to Tuesday, August 6th. MAKE YOUR VOICE HEARD #StrongerTogether

As preparations for the next 5-year legislative term begin, we once again ask Ursula von der Leyen and her future Commissioners to heed the call of #ActRare2024. They have an opportunity to play a pivotal role in shaping a more inclusive health union. How? 👇 go.eurordis.org/mzShKZ

Sign up for our webinar, 'Speech & Language in Rare Genetic Conditions', hosted by Unique w/Prof Angela Morgan from Murdoch Children's Research Institute & the University of Melbourne. Tues 17th Sept, 1pm (UK): bit.ly/SLRGC #SpeechandLanguage #FamilySupport

🎨We're excited to share the FutureNeuro Centre "My Unique Brain" Art Competition with you! Open to all young people across Ireland. Learn more and enter today! …o-my-unique-brain-art-competition.com/my-unique-brai… #MyUniqueBrain #ArtCompetition #BrainHealth #

10 weeks to go! Speakers include rare disease patients, family members, advocates and professionals working on the field of rare diseases. Register now on eventcreate.com/e/rareireland2… or rareireland.ie Rare Diseases Ireland 22Q11 Ireland Dr Suja Somanadhan RAiN Joan Johnston

⏳ Just a reminder! The 2024 RDCTN Seed Funding Award deadline is now 23rd August! 🎉 Showcase your #raredisease research and make an impact! 🚀

As part of implementing the EU Health Data Space, HIQA Department of Health HSE Ireland HealthResearchBoard are creating a Public/Patient Involvement Panel on “Collecting, using, sharing health information for better services, policy, research & innovation” Details here: bit.ly/3yq176B

It's #InternationalYouthDay! Young people are cited as an EU priority, so as new policymakers settle into office for the 5-year term, we urge them to heed the words of young rare disease advocates and enact the changes young people with rare diseases are calling for! ✊ #IYD

We’ve got exciting topics lined up for tomorrow! 🎉 Dr. Bridget Moran on "Stickler Syndrome: NHS Care Pathway" and Dr. Kevin Gaughan on "Synthetic Biotic for PKU, Phase 2 Trial." All welcome, join us to learn, chat and connect! Register: ucd-ie.zoom.us/webinar/regist…

Join RDI webinar to highlight & discuss the need of a World Health Assembly Resolution on Rare Diseases and to learn the opportunities to improve the lives of persons living with a rare disease. Register to attend rarediseasesinternational.org/event/wha-publ…

Hurry! ⏰ There is less than one week left to respond to the #RareBarometer survey on the impact of living with a rare disease on daily life. Don’t miss this chance to make your voice heard! 🗣️tiny.cc/RB_DailyLife

Disappointing response HSE Ireland Children, Equality, Disability, Integration, Youth Department of Health Easy to say no regional disparity for PLWRD, when almost no services offered today. Time to rollout rare disease care pathways regionally to "test" this theory and show what will/won't work. Bernard Gloster Stephen Donnelly