Rare disease registry

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Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,142
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
 

old dog

Distinguished member
Joined
Aug 27, 2011
Messages
243
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
City
Scio
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.
 

kfletcher

Active member
Joined
Apr 7, 2014
Messages
56
Reason
PALS
Diagnosis
12/2007
Country
Uni
State
Tennessee
City
Rutledge
Thank you for this info. I went and signed up with them.
 

Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
City
By the beach
Techno awesome me...I THINK I've signed up...
 
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