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 Coreen Gray and Leslie Urdaneta. To get started, email [email protected] 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