Patient voices must continue to be heard if we want to build people-centered health systems. I am grateful to European Patients' Forum for their excellent contributions to our work. #HealthUnion

Such an Informative conference. Thanks RARE Ireland for inviting me. & for a lovely celebration of our #rare community geat to meet so many families from all over the country & hear their stories. Rare Diseases Ireland EURORDIS-Rare Diseases Europe 22Q11 Ireland IPPOSI Alan Finglas Bernadette Sheehan Gilroy

Learn from leading specialists about best practices in delivering a rare disease diagnosis to empower people living with a rare disease to access appropriate care and go on to realise their full potential! Just three days left! 🗓️ 23 October ➡️ Register: go.eurordis.org/CwU7Vs

Looking forward to listening ERN-EYE EURORDIS-Rare Diseases Europe Retina International

EURORDIS Vice-President Simona Bellagambi, spoke on behalf of the European rare disease community at today’s European Economic and Social Committee plenary during a debate on two health-related EESC opinions. These are the key takeaways 🧵⏬

Rounding out the debate with her concluding remarks, Simona Bellagambi thanked the Committee for their ongoing support and called for today's sentiments to be translated into concrete actions, decided on with the people they impact - the rare disease community. 🇪🇺 (End /🧵)

To harness their potential to drive #innovation #ERNs must be allowed to collaborate with all stakeholders Only 5% of #RareDisease have treatments & #HUMN - we need to act now Together for Rare Diseases EURORDIS-Rare Diseases Europe Retina International Rare Diseases Ireland ERN-EYE

RI is delighted to announce the publication of “Economic Burden of Late-Stage Age-Related Macular Degeneration in Bulgaria, Germany, and the US” in JAMA Ophthalmology. Official press release : lnkd.in/e3uWrMkV Full publication : lnkd.in/evZySUuG #AMD #Vision

Finally 300,000 people living with #raredisease in #Ireland recognised in budget line. An important day for the community. Thanks Vicky Rare Diseases Ireland & volunteers who fought for this - never give up! RARE Ireland IPPOSI EURORDIS-Rare Diseases Europe 22Q11 Ireland Pádraig O'Sullivan TD John Lahart TD

Thank you team for inviting me! So great to see my NRDO friends again Rare Diseases Ireland thanks also to matt johnson for your work on our paper matt johnson EURORDIS-Rare Diseases Europe Irish Healthcare Awards

✨ Today is #RareDiseaseDay! ✨ Shining a light on the 300 million people worldwide living with a rare disease. We raise awareness of their challenges and advocate for more research, care, and better policies. 🔬💪 Join us in spreading the word! 💫🗣️ #StrongerTogether

Wow Eibhlin Mulroe 🌈 the launch of the 1st plan New one coming soon...important work by Vicky McGrath Rare Diseases Ireland SavingDylan.com Alan Finglas & commitment from new minister Jennifer Carroll MacNeill TD the work continues! EURORDIS-Rare Diseases Europe Department of Health #RareDiseaseDay

Today, 28 February is #RareDiseaseDay. This special day highlights how rare conditions shape lives in ways many don’t see for the 300,000 people in Ireland living with a rare disease. Make a difference on Rare Disease Day. Find out how to get involved: rarediseaseday.org

Timely publication of National Rare Disease Office HSE Ireland research in collaboration with Rare Diseases Ireland RARE Ireland "People living with rare diseases reported a need for psychological supports at all stages of their patient journey." Jennifer Carroll MacNeill TD link.springer.com/content/pdf/10…

#RareDiseaseDay2025 in #Kiev the courage & determination of our colleagues in the #RareDisease community in #Ukraine is remarkable... in awe! ❤️ from #Ireland Rare Diseases Ireland RARE Ireland EURORDIS-Rare Diseases Europe

Together - with multi-stakeholder collaboration WE CAN acheive our goals #Research Stine Bosse / Christine Adam Jarubas #RareDiseasesday HaDEA JARDIN Joint Action Retina International Rare Diseases Ireland RARE Ireland EURORDIS-Rare Diseases Europe HSE Ireland CancerTrialsIreland 🌈

MEP Stine Bosse / Christine states that securing "access to capital" is key to improving access to rare disease treatments. "We, as lawmakers, need to understand: what are the hinders, what are the difficult areas, and how do we understand the pipeline of investing in, for example, a drug."

Celebrating #women in #Retina #Ophthalmology #RareDisease for their #innovation in #diagnosis #care #treatment & #leadership too numerous to mention - always moving forward Happy #InternationalWomensDay The fight continues 🌷💪 Retina International Rare Diseases Ireland EURORDIS-Rare Diseases Europe ERN-EYE

We are indebted to our friend & colleague Birthe who was a role model to so many in the #RareDisease community. Her deep knowledge, intellect, quiet dignity & empathy will never be forgotten. Rest in peace Birthe x EURORDIS-Rare Diseases Europe Rare Diseases Ireland RARE Ireland

The World Health Organization (WHO) has just adopted its first-ever Resolution on Rare Diseases. We warmly welcome this development and stand ready to contribute to the 10-Year Global Action Plan this Resolution mandates. Learn more👉 go.eurordis.org/iyFxZd