Show Your Stripes for Rare Disease Day!
Show Your Stripes is a fun way to engage neighbours, friends and the larger community on Rare Disease Day. There are so many ways to participate in the campaign. Get Creative!
28th February is Rare Disease Day!
Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Spotlight on members of our community living with neuromuscular conditions: Brendan O’Connell
Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Brendan for sharing his story and raising awareness about McArdle disease, which is also called Glycogen Storage Disease Type V (GSD V). The spotlights will be added to a dedicated page on our website so that you can learn about people’s experiences of living with each condition.
Spotlight on members of our community living with neuromuscular conditions: Donal McTernan
Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their condition, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Donal for sharing his story and raising awareness about myotonic dystrophy. The spotlights will be added to a dedicated page on our website so that you can learn about people’s experiences of living with each condition
Spotlight on members of our community living with neuromuscular conditions: Tania Quill
We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support.
Spotlight on members of our community living with neuromuscular conditions: Jimmy Murray
I don’t like the words inspiration / inspiring. That’s not my role in life. My job is to live life and not be an inspiration to people, though they mean well. A lot of people with disabilities hate that.
In Profile: Interview with Aoife McNicholl Ireland Powerchair Football Team Member.
I’m Aoife McNicholl and I play powerchair football. I have Spinal Muscular Atrophy Type II. Powerchair football is a unique sport that provides opportunities for people with a high level of impairment to access the game of football.