Registry
- Thread starter NatalieD
- Start date
-
- Tags
- als als registry angry
- Status
Lavender Lady
Distinguished member
- Joined
- Jul 6, 2010
- Messages
- 445
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- WA
- City
- Lake Stevens
Natalie, I believe that is correct and if not someone else please say so.
KC2U2
Distinguished member
- Joined
- Sep 20, 2010
- Messages
- 231
- Reason
- PALS
- Diagnosis
- 09/2010
- Country
- US
- State
- LA
- City
- Broussard
Who can become a member of the registry?
The National ALS Registry is open to all people with ALS who are citizens or legal residents of the United States.
from the registry FAQ page
The National ALS Registry is open to all people with ALS who are citizens or legal residents of the United States.
from the registry FAQ page
NatalieD
New member
- Joined
- Dec 2, 2010
- Messages
- 6
- Reason
- Lost a loved one
- Country
- US
- State
- NE
- City
- A small town
Katie C
Very helpful member
- Joined
- Aug 1, 2009
- Messages
- 1,563
- Reason
- Lost a loved one
- Diagnosis
- 07/2009
- Country
- US
- State
- CA
- City
- San Jose
The registry has two ways to join... one for PALS, one for everyone else. The "public option" is informational only, no input allowed. The actual PALS registry accepts input from living PALS only... there is no option for entering information for deceased PALS. I wrote to the CDC about this, explaining my disappointment, and basically got an "oh well" response. I too am very angry.. I definitly resent that my husbands information no longer matters because he died a couple of months too early!
Gail
Member
- Joined
- Jun 11, 2010
- Messages
- 10
- Reason
- PALS
- Diagnosis
- 10/2007
- Country
- US
- State
- az
- City
- Tempe
I am so sorry you lost him. you must be devastated. As I understand it, the information in the registry will be used to study how people with ALS are living with the disease. I have looked at the information they are collecting and I think it is lacking in many areas but it is a work in progress. I am certain no one is devaluing the worth of those who have passed on.
- Status
