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 federal level. Federal policies can increase life-saving medical research and access to care for MPS patients.
The Advocacy Committee focuses on a number of goals throughout the year, including regular reviews and calls to action regarding MPS and ML legislation, carefully crafted appropriations language, reaching and spreading our message to new members, collaborating with the rare disease community as a whole, advocacy training webinars and growing and fostering relationships with key decision-makers. To join the Advocacy Committee or for more information, contact Stephanie Bozarth.
Causes we champion:
- 21st Century Cures
- Newborn screening by state
- NIH research focused on MPS and ML
- Streamlining the pathway from research to treatments
- Educating decision-makers on the complexities of MPS and ML
Our speakers bureau is a core group of speakers who have MPS or ML or are parents of those with MPS and ML and want to tell their stories. Our speakers educate the public and act as a community resource to raise MPS awareness.
For more information, contact us!
Speakers Bureau Training Video
How to Tell Your Story
Help us make a difference for MPS and ML
There are no cures for MPS and ML, and only four syndrome types have treatments. Join our network of advocates in being a voice for MPS. We’ll send you updates on legislation affecting rare diseases, and you can join our monthly advocacy call to hear what’s on the horizon and what we’re working on currently.
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.
thomas.loc.gov Official website of the Library of Congress, view legislation, the congressional record, committee pages and contact your elected officials.