Recommended Steps After Diagnosis


  • ALS can be difficult to diagnose. If you were not diagnosed by a neurologist who specializes in neuromuscular diseases, request a referral to one for a confirmation of the diagnosis.
  • The diagnosis of ALS can raise many questions and concerns. There are agencies and organizations out there whose specific purpose is to help. Find out about them and take advantage of what they can offer.
  • Register with The ALS Association Greater Philadelphia Chapter (877-434-7441 or 215-643-5434). Request information about services and publications.
  • Register with the National ALS Association (800-782-4747). Request the 6-volume set of information called “Living with ALS,” along with the guide entitled, “Living a Fuller Life with ALS.”
  • Register with the CDC ALS National Registry. The Registry will identify cases of ALS from throughout the United States and collect vital information about the disease that may help researchers learn what causes ALS and how it can be treated and even prevented. To enroll, visit
  • Consider contacting your medical insurance provider and request that you be assigned a case manager to be your primary point of contact.
  • Consider contacting an attorney who specializes in elder law and make an appointment to discuss legal and financial planning recommendations.
  • If you served in the military, there are health, vocational and disability programs and services available. Talk to your social worker about the advocacy services available through the PVA (Paralyzed Veterans of America) and DAV (Disabled American Veterans) to begin the application process.
  • If you are employed, consider contacting the Office of Vocational Rehabilitation and request information about available services.
  • You have a “team” available to work with you, answer questions, provide direction and listen. Let us know what you need.

Go to Navigating Life with ALS page


The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.