The Adult Resource Committee exists to provide support for teens and adults diagnosed with MPS and ML.  The group holds monthly Zoom meetings and other events throughout the year. Below you will find links to some helpful resources that are tailored specifically for this unique section of the MPS and ML community.

If you are interested in learning more or joining the Adult Resource Committee, please contact us at [email protected].

If you would like to receive an Adult Road Kit, you may request one by emailing Katelyn Blackman at [email protected].

“Rarely Defined” Partnership program – Are you an individual 12 years or older with MPS or ML? Would you love to connect with similar individuals in a partnership program to gain insight, guidance and resources through peer support? The ARC’s “Rarely Defined” program partners up teens and adults to create unique relationships to share advice and learn more about the challenges of the MPS and ML journeys.  Please follow this link to complete an interest survey and learn more.

Shop the Rare Aware Shop! Designs were created by our ARC members, and proceeds directly benefit programs for adults with MPS or ML.


Fact Sheets

Adaptive Devices
Disability & Education
Independent Living
Job Seeking, Interviews, & Resumes
Medical Records File for Family
Relationships
Social Security Disability
Tips for Talking to your Care Team
Vocational Rehabilitation

Our Mission

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

Contact Us Family Support Programs