Ataxia Support

Eyeforpharma Patient Summit

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 :slight_smile: 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