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ALS Advocacy Groups and Support Organizations

ALS Advocacy Groups & Support Organizations

Use the following links to learn about ALS advocacy groups and support organizations in the United States. Connecting with groups and organizations is a great way to find community support, further education about ALS, and activism opportunities.

Please note that this list is not all-inclusive. There are other regional/local support programs throughout the United States. After enrolling in ACT, your ACT Care Coordinator can help you connect with organizations near you.

Resources

Download the ACT Support Program Brochure

ACT Support Program Brochure

  • An introduction to the ACT Support Program
  • Use it to quickly reference information about the program
  • Print it or email it to your doctor or loved ones to tell them about ACT
Download
Download the About Specialty Pharmacies PDF

ACT Specialty Pharmacies Flashcard

Download this quick guide explaining what specialty pharmacies are and how they can help you.

Download
Download the ACT Frequently Asked Questions PDF

ACT Frequently Asked Questions (FAQs)

Download answers to commonly asked questions about the ACT Support Program.

Download

For additional resources, please visit RELYVRIO.com.

Connect With ACT

Go to Connect With ACT page now
IMPORTANT SAFETY INFORMATION

Before you receive RELYVRIO, tell your doctor about all of your medical conditions, including if you:

  • Have pancreas, liver, or intestinal problems
  • Have heart failure, including congestive heart failure
  • Have high blood pressure
  • Have kidney problems
  • Are pregnant or plan to become pregnant. It is not known if RELYVRIO will harm your unborn baby
  • Are breastfeeding or plan to breastfeed. It is not known if RELYVRIO passes into your breast milk. You and your doctor should decide the best way to feed your baby

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements and any taurursodiol products, such as tauroursodeoxycholic acid (TUDCA).

RELYVRIO may affect the way other medicines work, and other medicines may affect how RELYVRIO works.

What are the possible side effects of RELYVRIO?
RELYVRIO may cause serious side effects, including:

  • Changes in bile acid levels. RELYVRIO may increase bile acid levels and cause worsening diarrhea if you already have problems with your liver, bile ducts, or pancreas. Your doctor should monitor you for these side effects. Some disorders of the pancreas, bile ducts, or intestines may also make it harder to absorb RELYVRIO
  • Salt (sodium) retention. RELYVRIO contains a high amount of salt. For people who are sensitive to salt intake, such as people with heart failure, high blood pressure, or kidney problems, limit the amount of salt you eat and drink. Talk to your doctor about the total amount of daily salt that is right for you. Your doctor will monitor you for signs and symptoms of salt retention during your treatment with RELYVRIO

The most common side effects of RELYVRIO include diarrhea, abdominal pain, nausea, and upper respiratory tract infection.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of RELYVRIO. Call your doctor for medical advice about side effects.

You may report side effects to FDA at 1-800-FDA-1088.

INDICATION

RELYVRIO is indicated for the treatment of amyotrophic lateral sclerosis (ALS) in adults.

For more information about RELYVRIO, please see the full Prescribing Information and Medication Guide.

Are you a healthcare professional?

We can provide you with educational resources about the ACT Support Program and the Enrollment Form to help get your patients started on RELYVRIO.

Learn More

Talk to your patients about enrolling in ACT

Let them know they will receive personalized support as they start and continue on RELYVRIO.

RELYVRIO Enrollment Form
Relyvrio logo
Visit our other websites to learn more about RELYVRIO
Visit RELYVRIO website for people living ALS and their caregiversRELYVRIO.com - For People Living With ALS and Their Caregivers
Visit RELYVRIO website for Healthcare ProfessionalsRELYVRIO-HCP.com - For Healthcare Professionals
Download RELYVRIO Full Prescribing Information PDFFull Prescribing Information
Visit our other websites to learn more about RELYVRIO
Visit RELYVRIO website for Healthcare ProfessionalsRELYVRIO-HCP.com - For Healthcare Professionals
Visit RELYVRIO website for people living ALS and their caregiversRELYVRIO.com - For People Living With ALS and Their Caregivers
Download RELYVRIO Full Prescribing Information PDFFull Prescribing Information
IMPORTANT SAFETY INFORMATION

Before you receive RELYVRIO, tell your doctor about all of your medical conditions, including if you:

  • Have pancreas, liver, or intestinal problems
  • Have heart failure, including congestive heart failure
  • Have high blood pressure
  • Have kidney problems
  • Are pregnant or plan to become pregnant. It is not known if RELYVRIO will harm your unborn baby
  • Are breastfeeding or plan to breastfeed. It is not known if RELYVRIO passes into your breast milk. You and your doctor should decide the best way to feed your baby

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements and any taurursodiol products, such as tauroursodeoxycholic acid (TUDCA).

RELYVRIO may affect the way other medicines work, and other medicines may affect how RELYVRIO works.

What are the possible side effects of RELYVRIO?
RELYVRIO may cause serious side effects, including:

  • Changes in bile acid levels. RELYVRIO may increase bile acid levels and cause worsening diarrhea if you already have problems with your liver, bile ducts, or pancreas. Your doctor should monitor you for these side effects. Some disorders of the pancreas, bile ducts, or intestines may also make it harder to absorb RELYVRIO
  • Salt (sodium) retention. RELYVRIO contains a high amount of salt. For people who are sensitive to salt intake, such as people with heart failure, high blood pressure, or kidney problems, limit the amount of salt you eat and drink. Talk to your doctor about the total amount of daily salt that is right for you. Your doctor will monitor you for signs and symptoms of salt retention during your treatment with RELYVRIO

The most common side effects of RELYVRIO include diarrhea, abdominal pain, nausea, and upper respiratory tract infection.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of RELYVRIO. Call your doctor for medical advice about side effects.

You may report side effects to FDA at 1-800-FDA-1088.

INDICATION

RELYVRIO is indicated for the treatment of amyotrophic lateral sclerosis (ALS) in adults.

For more information about RELYVRIO, please see the full Prescribing Information and Medication Guide.

Reference: 1. RELYVRIO. Package insert. Amylyx Pharmaceuticals Inc; 2022.