Welcome to the ALS Registry

http://www.patientslikeme.com/registry

This is the registry for Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease, or ALS) patients. I originally started it as a mailing list and it is now being maintained on the PatientsLikeMe site. If you are a Person with ALS (PALS), you can add your name by signing up for a PatientsLikeMe account and filling out your profile.

I am excited about what we can do with the ALS/MND Registry at the new PatientsLikeMe it will be more then just a registry for pals, you can have you own detailed profile page. If you have any questions email PatientsLikeMe at support@patientslikeme.com. I think this is going to be great. It is a registry that has detailed information from the patients who want to share it. Plus you can come back as often as you want and update your info, so it is as current as possible, plus see what other pals are doing and how they are doing it, what they are taking.

You can help by passing this info on to other PALS.

http://www.patientslikeme.com/registry

Thanks,
Bobby Brannigan (PALS, diagnosed 1994)

robertb@mitchell.main.nc.us

ALS IS NOT PREJUDICE
WHERE EVER, WHEN EVER, WHO EVER

PatientsLikeMe
A new system of medical care by patients, for patients
a.. Discover better ways to manage your disease.
b.. Benefit and learn from shared experiences.
c.. Connect to those making a difference in your disease.
d.. http://www.patientslikeme.com/

http://www.patientslikeme.com/registry

Subject:
New updates... ALS Registry!
Received:
Apr 10, 2006 04:59PM
From:

jcole
(admin)

Hello everyone, here's an update about the latest PatientsLikeMe features and what we have planned for the near future.

First, we are excited to be working with Bobby Brannigan to host his ALS Registry on PatientsLikeMe. Bobby has been maintaining his list for a while through email and we hope by hosting it on PatientsLikeMe we can add some additional functionality and keep it as up-to-date as possible. The registry works by listing PatientsLikeMe members, their first and last name, and basic profile. It can be viewed by anyone, not just PatientsLikeMe members. If you would like to be included in the registry, set your registry permission on the Account Info page and make sure you have set your first and last name as well.

Also, you can now tell us about yourself in an extended bio. Fill it out on the Bio page. Other members will find your bio on your profile page.

We have some exciting features planned in the future, including the ability to leave comments and feedback for patients on their profile page. Plus, we keep adding improvements and fixes every day. If there is something you would like to see fixed or added, just let us know!

Thanks again for your participation in the PatientsLikeMe community, and as always, keep spreading the word!

-Jeff
http://www.patientslikeme.com/

http://www.patientslikeme.com/registry

Account Info First Name
Last Name
Email
Privacy Level Visible

Include in Registry I want to be listed in the ALS registry. Non-PatientsLikeMe members will see my basic info (name, age, disease onset, diagnostic history). The registry permission is independent of any privacy levels you have set above. To be listed, you must include your First Name and Last Name.

This is the registry for Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease, or ALS) patients. It is intended to help Persons with ALS (PALS) reach out to each other. I originally started it as a mailing list and it is now being maintained on the PatientsLikeMe site. If you are a PALS, you can add your name by signing up for a
PatientsLikeMe account and filling out your profile. If you have any questions about privacy or terms of service, email PatientsLikeMe at support@patientslikeme.com.

In regards to the company... I would add the following:

PatientsLikeMe is in the business of helping patients. We are a privately funded for-profit company with a goal to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data (http://www.patientslikeme.com/ ). To the end of helping patients, we partnered with Bobby Brannigan, an activist patient in the ALS community, to host his grass roots ALS Patient Registry. We are
happy to work with any organization that wants to use the data on the registry to improve the lives of patients.

Ben

Benjamin Heywood
Co-Founder
PatientsLikeMe Inc.
79 Antrim Street
Cambridge, MA 02139
bheywood@patientslikeme.com
c. (310) 383-1908

Did you Know...
- The US Government spends an average of only $400 per ALS patient per year

- 80% of all patients die within 5 years

- ALS can strike anyone, anywhere and anytime

- The 1 FDA-approved drug for ALS patients extends a patient’s life by only 3 months

- Average age of onset is 48 years old

- People don’t get ALS... Families get ALS!

BACK TO ALS/MND QUESTIONS

HOME

MGM