Alan on speaking panel with Flora from Findacure
Re the summit you attended Alan. Mostly I don’t think beyond Ataxia, with it being the way it is. But, it was only when I looked at the screen behind you, and read Psoriasis, that the penny dropped. Findacure have an enormous task on their hands xB
Thank you for your reply, and studying the picture.
Yes, many Ataxia patients may not " look outside" the single condition.
I will be uploading more pics of the event.
Ataxia is an Umbrella of A lot of Ataxias and is rare disease, of which there is approx. 7/8000 rare diseases. Plus Ataxia and other conditions may "share" symptoms.
It is Internationally recognised that I advocate for rare disease, it is also recognised that I do so with the focus of the Ataxia patient. Many mentions of me from the International speakers at the patients Summit were witnessed ( it seems I am know throughout the world for raising Ataxia Awareness and bringing it to the fore, within the whole chronic condition community).
This is the main reason I am invited to speak at many International conferences.
I also got awarded a peer mentoring Award from findacure and also know as the rare disease warrior
Indeed (as you know) I sit on the rare disease UK group - Patient Engagement Group- to feed directly to the UK Strategy for Rare diseases. Which again for the reasons above.
Also feed into Health board issues and Orphan Drug meet I/conferences.
Wales rare disease warrior