Beginning your journey with MPS or related disease:

Has your child recently been diagnosed with an MPS disease, or is your child undergoing diagnostic testing? We know the information you have received is new and confusing, but please know we are here to hel, and can provide you with an abundance of information.

Where should you start?

Learn more about the specific syndrome by visiting the following page.

Become a member of the National MPS Society. Complimentary one-year membership is available for newly diagnosed families residing in the United States. Contact Alison Blue, Program Director at alison@mpssociety.org or fill out the online application here.

Visit the MPS Library and download a copy of our syndrome booklets and fact sheets.

Treatment options: At this time, enzyme replacement therapy (ERT) is available for MPS I, MPS II, MPS IV and MPS VI. Bone marrow or cord blood transplant is recommended for some individuals diagnosed with certain types of MPS.

Emerging therapies and research: MPS drug development is ongoing, and the MPS Society funds researchers and clinicians working on these therapies for MPS. For more information on these potential treatments, visit our emerging treatments page, clinical trial page and clinicaltrials.gov.

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. E-mail info@mpssociety.org for additional family connections.

Attend local MPS events. Is there a fundraiser or walk/run happening in your area?

Know that you are not alone. See our Emotional Response to Diagnosis Fact Sheet and Dr. Kimberly Frye’s presentation on Coping with MPS.

Learn how the National MPS Society was started by parents just like you.