DRPLA

[majajefferies]

We are looking for people with DRPLA in order to try and get an orphan drug trial started. Our son was diagnosed with it in January and as it is a very rare form of ataxia it is vital to get as many patients together as possible to make it a more viable option for the pharmaceutical companies.

[wobblybee]

Hi 🙂 I posted your enquiry on 2 Facebook Ataxia Support Groups, and searched archive discussions for DRPLA. If I see any replies I’ll post on here 🙂xB

[majajefferies in reply to wobblybee]

Thank you very much!

I am truly useless with computers but I am trying my best. Any help/guidance is hugely appreciated!

[SueMillman Partner Ataxia UK]

Hi, have you been in touch with Ataxia UK? We keep a registry of people who are interested in participating in research and we may have a few people recorded as being interested. Sue

[majajefferies in reply to SueMillman]

Hi Sue,

Yes, I have been talking to Julie Greenfield. She has been very helpful. But we are still no closer to getting the patients together and organised in order to get the orphan drug trial.

I just don't know how to do all of that...