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 email@example.com or call 919-806-0101, and our family support team will welcome you and get you started in the program.
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
Contact us! Our Pathways Program for newly diagnosed families provides customized, comprehensive support throughout the first year of diagnosis. Email firstname.lastname@example.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.
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.