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Newly Diagnosed

You are not alone.

Receiving a diagnosis of ALS is challenging and overwhelming. There is so much to know, a great deal to consider, and typically a host of questions. While no two people with ALS are alike or will experience the condition the same way, there is a great deal of collective knowledge and wisdom available from health care providers, people with ALS, family members and caregivers.

Register with ALS United Orange County

ALS United Orange County team of professional Care Managers provide expert advice and assistance for people living with ALS, free of charge. Our office is open Monday through Friday. Please contact us at (714) 285-1088 call or text..

Learn More About ALS

Watch our series of educational videos and webinars to learn more about the disease, living with ALS, and treatment options.

Register with the National ALS Registry

What is the National ALS Registry?

The National ALS Registry is a federally managed program by the
CDC’s Agency for Toxic Substances and Disease Registry (ATSDR),
created under the ALS Registry Act (2008).

Purpose: Collect, manage, and analyze data about people living with Amyotrophic Lateral Sclerosis (ALS) in the U.S.

Goals

  • Estimate how many new ALS cases occur annually.
  • Understand who gets ALS and identify potential risk factors.
  • Support research to find causes and improve care.
  • Provide resources such as clinical trial information and the National ALS Biorepository for sample collection.

Key Features

  • Risk Factor Surveys: Participants answer questions about demographics, lifestyle, environmental exposures, and medical history.
  • Biorepository: Collects blood, saliva, urine, and postmortem tissue samples for research.
  • Research Access: Data is used by scientists to study patterns, risk factors, and develop treatments.
  • Clinical Trial Alerts: Participants can opt-in for notifications about trials and studies.

How to Register

Eligibility: Anyone in the U.S. diagnosed with ALS, age 18 or older.

  1. Go to the

    CDC’s National ALS Registry site
    .
  2. Create an account and complete risk factor surveys.
  3. Optionally donate samples to the Biorepository.

Assistance: Caregivers or trained volunteers can help with enrollment (available in English and Spanish).

Impact on Research

Registry data has supported over 120 published studies and
33 biorepository-based projects. It helps identify environmental and genetic
risk factors, informs clinical trial recruitment, and improves ALS care strategies.

Find a Certified Center or Clinic

ALS United Orange County collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to specialized care, based on best practices. Recognized Treatment Centers provide compassionate care in a supportive, family-oriented atmosphere.

Join a Support Group

Support Groups provide opportunities for people living with ALS and their loved ones to share their personal experiences and learn more about strategies for preserving independence and maximizing quality of life. All ALS United Orange County's Support Groups are facilitated by our professional Care Managers with extensive experience in ALS. 

Additional Resources