Beginning your journey with MPS or ML

Where to begin

  • Contact us! Our Pathways Program for newly diagnosed families provides customized, comprehensive support throughout the first year of diagnosis. Email pathways@mpssociety.org or call 919-806-0101 to connect immediately.
  • Become a member of the National MPS Society. Membership is free for patients, friends and families.
  • Learn more about the specific MPS syndromes, treatments and clinical trials by visiting the corresponding page. 
  • Visit the MPS Library and download a copy of our syndrome booklets and fact sheets.
  • Connect with other families who have a child with the same syndrome. The National MPS Society office can help make this happen. Other parents are the best resource available. Contact us!
  • Attend local MPS events. Is there a fundraiser or event happening in your area?
  • Know that you are not alone. See our Emotional Response to Diagnosis Fact Sheet and Dr. Kimberly Bennett’s presentation on Coping with MPS.

Our Mission

The National MPS Society exists to cure, support and advocate for MPS and ML.

Contact Us Family Support Programs