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Pathways Program

Newly Diagnosed with MPS or ML

Supporting you every step of the way throughout the first year of your journey with MPS or ML

Group photo of family and volunteers at an MPS awareness event

Family in matching tshirts at the starting line of a MPS 5k event

The Pathways program provides families with education and comprehensive support throughout the first year of diagnosis. Through innovative ways, we connect members with services, both locally and collectively. We equip and strengthen families to manage care and establish resources needed for the MPS and ML journey.
Pathways is led by National MPS Society staff members. To get started, email or call 919-806-0101, and our family support team will welcome you and get you started in the program.

Pathways includes:

An assessment of current needs for the individual with MPS or ML and the whole family

Connection with others for support and firsthand experience

Sharing of National MPS Society resources and programs

Face-to-face visitation with a trained Society professional

Ability to access direct support throughout the first year of diagnosis

Assistance navigating insurance and accessing federal, state, and local resources

Linking to treatment options and information about clinical trials available

Provision of emotional support

Education about MPS and ML

Developing plans for coping and resiliency

Information about Centers of Excellence and medical providers familiar with specific needs

Support to share your story and tell others

Newly Diagnosed

Where to begin:

Contact us! Our Pathways Program for newly diagnosed families provides customized, comprehensive support throughout the first year of diagnosis. Email 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.