The ALS Association provides a list of support groups across various states, helping those with Amyotrophic Lateral Sclerosis (ALS) find local support. An online tool is also available to locate groups in nearly every state. Online platforms like Patients Like Me and ALS Forums allow individuals with ALS to connect and share experiences virtually. Additionally, the National ALS Registry, maintained by the CDC, collects data to support research and informs patients about clinical trials, increasing resources available to those with ALS.
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Here’s a list of ALS support groups that can offer some answers, support, understanding, and hope that you and your caregivers need now:
The ALS Association Support Groups
The ALS Association maintains a very helpful, long-running list of ALS support groups. We have included several state chapters below, to help you get connected with the ALS support group nearest you.
Don’t see your state in the list above? Don’t worry! There are support groups offered in nearly every state. With this helpful online tool, you can filter ALS support groups by state, to find the one nearest you.
Other Support Groups
Patients Like Me and ALS Forums are two other great resources that provide virtual support and community involvement to those diagnosed with ALS.
Patients Like Me runs an ALS specific online forum, boasting over 170,000 members. The purpose of the forum is to allow patients with ALS to communicate virtually with one another in a supportive, stress-free environment.
Another online community dedicated to bringing together those suffering from ALS is ALS Forums. Through their website, members can join and participate in various online forums, specifically dedicated to ALS topics. Here, members are able to share their experiences, ask and answer questions, and help one another on their ALS journeys. Membership is free and community support is plentiful. Check out our blog on ALS support groups for more information.
The National ALS Registry
This national registry is maintained by the Centers for Disease Control and Prevention (CDC). From the CDC website: “The National ALS Registry is a program to collect and analyze data about persons living with ALS. It includes data from existing national databases and information provided by persons with ALS who choose to take part. Researchers can use Registry data to look for disease pattern changes over time.”
You can share information about the disease by completing surveys to help the ALS community better understand who gets it and what factors influence it. Individuals with ALS may be informed about clinical trials and study research happening throughout the country.
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