Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,384
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
This is for people with PLS and HSP as well as ALS
It is not geographically restricted. You will be notified of clinical research opportunities related to your disease. It seems like it might be a way of making your disease a little more visible as well. It is not signing you up or otherwise obligating you to participate in research. If you are already signed up with another registry ( like FALS or ALS) you can do this too
https://www.rarediseasesnetwork.org/cms/create/patients/Contact-Registry
It is not geographically restricted. You will be notified of clinical research opportunities related to your disease. It seems like it might be a way of making your disease a little more visible as well. It is not signing you up or otherwise obligating you to participate in research. If you are already signed up with another registry ( like FALS or ALS) you can do this too
https://www.rarediseasesnetwork.org/cms/create/patients/Contact-Registry