Get Rare Aware campaign

Thanks to everyone (35 organisations this year!) for your support of the upcoming Get Rare Aware campaign, launching next week. A few asks for you. We need patient voices for…

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Rare Disease Day

Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.…

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Charity Soccer Tournament in Aid of Dystonia Ireland On July 23rd 2023

Thanks to Darcy O Sullivan and his friends for raising €3,100 for Dystonia Ireland at this event. Read more about the event at: https://m.independent.ie/regionals/kerry/tralee-news/photos-show-tralee-bar-and-hotel-staff-enjoying-charity-soccer-tournament-for-dystonia-ireland/a788354191.html — Darren (Darcy) O’Sullivan from Tralee…

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VHI Womens Mini Marathon 2022

This year the VHI Womens Mini Marathon will take place on Bank Holiday Sunday 5th June. We would love to have you join us on the day for Dystonia Ireland…

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