Raise Your Voice: Advocate for MPS and ML
Join us in influencing policies and advancing research to support those affected by MPS and ML.
Advocacy for MPS and ML.
Advocacy is the best way for the MPS and ML community to share our stories with lawmakers and policy influencers who can help make a difference on a state and federal level. Sharing your stories, experiences, and support makes a difference in the lives of those with MPS and ML today, and those who will be diagnosed in the future.
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Ways to Get Involved
Speakers Bureau: Share Your Story
The Speakers Bureau is a platform for individuals with MPS or ML, as well as their loved ones, to share personal experiences and raise awareness. Speakers participate in Advocacy Hill Visits and public outreach efforts to educate lawmakers and the public.
To learn more, contact info@mpssociety.org
Advocacy Committee: Driving Legislative Action
The Advocacy Committee works year-round to keep our community informed and advance policies supporting the MPS and ML community. Key initiatives include:
- Reviewing and advocating for MPS and ML-related legislation
- Collaborating with the rare disease community
- Hosting advocacy training webinars
- Strengthening relationships with policy-makers
Our committee meets monthly via Zoom. If you’re interested in joining us, contact info@mpssociety.org.
Advocacy in Action: Hill Visits
The National MPS Society organizes Hill Visits every year, both in-person and virtually. These meetings connect MPS and ML advocates with lawmakers to push for policy changes, funding, and awareness.
Our Most Recent Visit:
Fall 2025 Speaker's Bureau Hill Visits
In October 2025, the Speakers Bureau and National MPS Society took part in in-person visits to Capitol Hill. Despite visiting in the midst of a government shutdown, 15 MPS and ML families were able to host approximately 50 meetings meet with Senators, members of Congress, and their staff.
Interested in participating in future events? Reach out to info@mpssociety.org
Upcoming Advocacy Events
Rare Disease Week 2026
Join advocates nationwide in discussions with lawmakers in Washington, D.C., in February 2026. More details coming soon.
Monthly Advocacy Committee Meetings
Join us via Zoom for our monthly meeting! Email info@mpssociety.org for more information.
Email info@mpssociety.org for Zoom details
Advocacy Interest Form
Thank you for your interest in advocating with the National MPS Society!
Your voice plays a vital role in raising awareness, influencing policy, and creating lasting change for individuals and families affected by MPS and ML. Whether you're new to advocacy or have experience, we're excited to learn more about your interests and how you’d like to get involved. Please complete the form below so we can better understand your advocacy goals and connect you with opportunities that match your passion and availability.
Advocacy Pledge Form
Federal Legislative Links
Firstgov.gov
Find out about local, state, and federal government agencies, programs and benefits.
House.gov
Find your representative, keep up to date on events on the House floor, or contact your representative.
NIH.gov
National Institutes of Health website. Find news, health information and links to NIH institutes, centers and offices.
Senate.gov
Find your senator, keep up to date on events or contact your senator.
Congress.gov
The Library of Congress, view legislation, the congressional record, committee pages and contact your elected officials.
Advocacy Toolkit
No matter your experience level, your voice has the power to create change. This support toolkit equips you with the resources to share your story effectively and make an impact. Below are helpful guides, videos, and tools. Click each section to learn more and access resources.
Webinar: Advocacy Prep
A step-by-step video that walks you through using the Advocacy Associates platform, crafting your story, and tips for successful meetings with lawmakers.
Webinar: Guide to Telling Your Story
Your personal story is a powerful tool for creating change. Whether you're speaking with lawmakers to advocate for MPS and ML research funding, educating a physician or teacher about your child's needs, or raising public awareness, knowing how to share your story effectively is essential. Gain valuable tools and strategies by watching the pre-recorded webinar below. Please allow a moment for the file to download.
Webinar: Guide to Social Media Advocacy
Are you interested in using social media to advocate to legislators about MPS and related diseases but aren’t sure how? This presentation describes how you can get involved with social media advocacy and the importance online engagement.
Contact Your Representatives
These links allow you to search for your representatives’ contact information.
Additional Resources
Download the following PDF's for more information on preparing for Hill visits and more.
Information about MPS, ML, and the Society
Download the following PDF's for more information on MPS and ML.
Turn Your Passion Into Action
Join our community of fundraisers and rally support for families impacted by MPS and ML. From local events to personal campaigns, your efforts help raise awareness, fund research, and bring us closer to cures.