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 in the same way, there is a great deal of collective knowledge and expertise available from health care providers, people with ALS, family members and caregivers.
Register with ALS Network
The ALS Network’s 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 fill out this new client intake form (also available in Spanish), contact us at 1-866-750-2572 or email us at firstname.lastname@example.org.
Learn About Insurance, Medicare, and Veteran Coverage
It is important to understand what is covered under your health insurance plan. You may want to contact your medical insurance provider and request that you be assigned a nurse case manager to be your primary point of contact. Many health plans offer this option.
If you served in the military, contact the Department of Veterans Affairs (800-827-1000) about eligibility for medical coverage and benefits, and disability programs and services.
Find a Certified Center or Clinic
The ALS Network 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. The Certified Treatment Centers of Excellence and Recognized Treatment Centers provide compassionate care in a supportive, family oriented atmosphere.
Join a Connection Group
Connection 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 Network Connection Groups are facilitated by our professional Care Managers with extensive experience in ALS.
Consider Participating in ALS Research and Clinical Trials
We partner with the Northeast ALS Consortium (NEALS) to provide the most accurate and up-to-date resource for information on both federally and privately funded clinical studies focusing on ALS and other similar motor neuron diseases. You can locate both interventional trials, which examine if an experimental treatment is effective and safe under controlled environments, and observational trials, which examine people in more natural environments to collect information about their disease without giving an intervention.
Register with the National ALS Registry
The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases throughout the United States. Most importantly, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease and how it can be treated.