Rare disease registry

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Nikki J

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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
 
Thank you, Nikki. I've been frustrated with being unable to register on the ALS registry. This provides a way for PLS patients to inform a portion of the medical world of their existence.
 
Thank you for this info. I went and signed up with them.
 
Techno awesome me...I THINK I've signed up...
 
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