Rare Ireland

10/10/2026

Only one week to go until our annual Conference and Ball 🎊

There is still time to grab your tickets below 🎫

We look forward to welcome you all to celebrate with us 💙💛



https://www.tickettailor.com/events/rareirelandevents2026?fbclid=IwdGRjcAU3O1pjbGNrBTc7TWV4dG4DYWVtAjExAHBkb2YBc3J0YwZhcHBfaWQMMzUwNjg1NTMxNzI4AAEe6w_L628ZcPt5D4dDYsydVnXkGLIMd7B3XLHUWRezXrqzuNoBCCviTowzgfU_aem_cO4eF3rLqM2AbE-CZq3CEA

06/10/2026

10 days to go until our ball.

Join us to celebrate 10 years of Rare Ireland at our Charity Ball on October 16th. Your support will help us to continue our work supporting families of children with rare conditions. Book your tickets on the following link https://buytickets.at/rareirelandevents2026/2250332

Rare Ireland 2026 – How it all began... Picture this: You've just received news that changes everything. Your child has been diagnosed with a rare ...

30/09/2026

🎟️ COMPETITION TIME! 🎟️

We're celebrating a decade of Rare Ireland, and we want YOU to join us! ✨

We're giving away 2 PAIRS OF TICKETS to the Rare Ireland 10 Year Celebration Ball! 🥂💃🕺

An unforgettable night of celebration, community and fun, marking 10 incredible years of supporting the rare disease community in Ireland. 💚

HOW TO ENTER:
👍 Like our page
🔁 Share this post
👯 Tag who you would bring with you

You do NOT need to be a Rare Ireland member or have any connection to rare diseases to enter. Everyone is welcome to celebrate with us! 🎉

21/09/2026

We are delighted to announce Emily Felix as our Keynote Speaker for our Rare Ireland 10 Year Celebration Ball.

Emily is a 28-year-old advocate living with Friedreich’s ataxia (FA), a rare, progressive neuromuscular condition diagnosed when she was 12 years old. She is a full-time wheelchair user and has experienced a wide range of symptoms associated with FA, including scoliosis, mobility loss, speech deterioration, swallowing difficulties, fatigue and nerve pain. Drawing on her lived experience, Emily has become a passionate advocate for people living with rare diseases and disabilities. This year, she spearheaded the national campaign for the reimbursement of Skyclarys, the first disease-modifying treatment approved for Friedreich’s ataxia, helping to secure access to the treatment in Ireland. Alongside her advocacy work, Emily works in financial regulation and is currently studying to become a solicitor.

https://buytickets.at/rareirelandevents2026/2250332

20/09/2026

Less than a month to go until our conference and ball. Join us for a day of connection, learning and raising awareness of the challenges facing families living with rare conditions and a night of celebrating rare and the milestones of Rare Ireland over the past decade. To get your tickets please follow the link https://buytickets.at/rareirelandevents2026/2250332

17/09/2026

Our agenda for this year's Rare Ireland conference which takes on October 16th 2026.
The theme for this year's conference is "Stronger Together: Amplifying the Rare Voice". This theme shows solidarity among the rare community, researchers, clinicians and advocates and ensures that no condition is too rare to matter. Our conference will give you Direct patient/family insight into the challenges associated with rare diseases, allow you to keep up to date on rare disease research, and give you the opportunity to network across different sectors.

Get your tickets at the link below

https://buytickets.at/rareirelandevents2026

Support organisation for families affected by rare conditions in Ireland
Email:[email protected]

09/09/2026

Thank you to Martina and all who organised and took part in the Sean McDermott GFC Mothers and Others fundraiser, which raised a fantastic €1,750 for Rare Ireland. Rare Ireland is a charity close to Martina's heart, as her son Tommy is living with a rare condition.

Thank you to all involved. The funds raised from this fundraiser will go directly to providing support for families of children with rare condition.