Help make a difference nationwide

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. Every advocate helps further our mission to cure, support, and advocate for MPS and ML causes!

 

Make Your Voice Heard! Become an Advocate Today

The Speakers Bureau is a program of the National MPS Society designed to move critical rare disease legislation forward and raise awareness. Our speakers consist of individuals with MPS or ML and the parents, family members, and friends of those with MPS or ML who wish to tell their stories. These speakers join us in our Advocacy Hill Visits, described below, as well as educate the public and act as a community resource to raise MPS Awareness. To learn more, please contact [email protected].

 

Advocacy Committee

The Advocacy Committee focuses on several 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 [email protected].

Committee Co-Chairs: Stephanie Bozarth, Christine Tippett

 

Advocacy Hill Visits – Virtual and In-Person

The National MPS Society hosts several opportunities to get engaged in advocacy throughout the year, with Advocacy Hill Visits occurring every spring. In recent years, the Society has participated in virtual visits through the Advocacy Associates Platform.

Virtual Hill Visit, Rare Disease Day 2022

The Speakers Bureau and Society team members participated in “Virtual Hill Day” on Rare Disease Day, Feb. 28, 2022. In preparation for meetings with senators, representatives, and staffers in Washington, DC, volunteer advocates from the MPS and ML community participated in training led by Advocacy Committee Co-Chair Stephanie Bozarth. In total, 59 advocates from 28 states participated in 89 virtual meetings to make real, meaningful change on behalf of MPS and ML families. In these meetings, MPS and ML families asked their legislators to cosponsor bills and increase funding for MPS and ML research.

 

Upcoming Advocacy Events

September is Newborn Screening Awareness Month! In September, organizations, patient advocates, and others across the country will work together to raise awareness about the importance of screening newborns for potential illnesses and genetic disorders. Follow our Facebook and Instagram pages to see the stories of MPS and ML families who received their diagnosis through NBS!  

  • Every third Wednesday of the Month: National MPS Society’s Advocacy Committee Meeting – Email [email protected] to receive the Zoom login information for this monthly meeting!
  • Sept 28: RDLA Webinar on Newborn Screening
  • Oct. 6-27: Virtual Rare New England Conference – This virtual event will cover the challenges and successes in today’s healthcare system, grassroots research funding, rare resources in New England, and mental health in the rare disease community. 
  • Oct. 15: Newborn Screening Bootcamp – A past attendee noted that this Bootcamp “is perfect for those new and old to newborn screening. The information covered is relevant for those seeking to learn and those seeking to advance their contributions to NBS processes and developments.” Build up your newborn screening knowledge in Tacoma, WA, or virtually!
  • Oct. 17-18: NORD’s 2022 Rare Diseases and Orphan Products Breakthrough Summit – Join your fellow rare disease leaders from patient advocacy groups, government, industry, and academia for exclusive access to fresh insights, compelling connections, and expert resources. In Washington, DC!
  • Oct. 26: 2022 WCG Patient Forum – Join us online to learn about what is most important to patients in clinical trials from the perspective of patients, their families and advocates, scientists, physicians, and clinical trial specialists from hospitals and drug companies.
  • Dec. 14: 11th Annual RareVoice Awards – EveryLife will honor advocates who give rare disease patients a voice in state and federal policy on Capitol Hill. RareVoice Awards recipients are chosen by a committee from nominations received from the rare disease community.
    • When: Wednesday, December 14th from 8:00 – 9:00 pm ET
    • Where: Arena Stage at The Mead Center for American Theater, Washington, D.C. and livestreamed
    • Learn more about the Event Here!
  • Feb. 28: Rare Disease Day – This worldwide event continues to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. More information about Hill Visits to come! 

 

Legislative Priorities in 2022:

Below are the key pieces of legislation we continue to push forward in 2022. They are accompanied by one-page summaries that can be used during meetings with members of Congress. 

  • Speeding Therapy Access Today (STAT) Act, S.670/H.R. 1730: this bipartisan bill was created with the input of the rare disease community and aims to increase the development of and access to therapies. This bill has 40 cosponsors in the House and 1 cosponsor in the Senate as of June 2022. 
  • Newborn Screening Saves Lives Reauthorization Act, S. 350/H.R. 482: this bill reauthorizes state grants to expand and improve screening programs, provide educational resources to parents and healthcare providers, and improve follow-up care for infants with a detected condition. The newborn screening bill passed in the House in June 2021 and currently has 12 cosponsors in the Senate as of June 2022. 
  • The Cures 2.0 Act, H.R.6000, was introduced to the House in January 2022. Advocates shared with their legislators that Cures 2.0 is designed to revolutionize how the United States provides care to patients with several provisions aimed at speeding up the delivery of groundbreaking, new (and potentially life-saving) cures, treatments, and innovations to those who need them most. This bill has 100 cosponsors as of June 2022. 

 

MPS II Added to the RUSP:

On August 2, Secretary Becerra approved MPS-II for inclusion on the Recommended Uniform Screening Panel (RUSP). Conditions listed on the RUSP are provided to individual states as a recommendation for adoption for newborn screening. This acceptance follows the Advisory Committee on Heritable Disorders in Newborns and Children’s (ACHDNC) approval to move the nomination forward to the Department of Health and Human Services after a considerable evidence review. This is the first condition approved for inclusion on the RUSP since SMA was approved in 2018. Click here to learn more.

Join the Advocacy Committee to learn about how you can share your story to make meaningful change! 

 

Resource Library

Newborn Screening

  • Recommended Uniform Screening Panel (RUSP): The RUSP is a national guideline for newborn screening (NBS). It consists of a list of conditions (PDF – 94 KB) for which the U.S. Secretary of Health and Human Services (HHS) recommends all newborns receive screening.
  • Newborn Screening in Your State: Visit the HRSA website to learn more about the complete list of conditions that are screened in each state.
  • Newborn Screening Overview: The NIH website offers more detailed information on newborn screening.

Rare Disease Advocacy Organizations

  • EveryLife Foundation: “Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changing public policy.”
  • Global Genes: An advocacy organization dedicated to connecting the rare disease community. It empowers patients, builds communities while seeking to eliminate the challenges experienced by people with rare diseases. 
  • Lysosomal Disease Network: “The combined and integrated efforts of the Lysosomal Disease Network focus limited resources toward creating a network of centers with expertise in these diseases in order to solve major challenges in diagnosis, disease management, and therapy.”
  • NORD – National Organization for Rare Disorders: “NORD’s voice is strongest when we all work together! We rely on patients to educate their representatives and to advocate in their local communities.” 

Help us make a difference for MPS and ML

There are no cures for MPS and ML, and only five 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 participate in our monthly advocacy call to hear what’s on the horizon and how you can help.

 

Advocacy pledge

I pledge to support the fight to end MPS and ML.

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 Official website of the Library of Congress, view legislation, the congressional record, committee pages and contact your elected officials.

Support Toolkit

Whether you are an experienced advocate or new to the scene, every voice makes a difference! This support toolkit provides you with resources to share your story in a compelling way. 

This page includes: 

  • Advocacy Prep Webinar: This video provides information on how to use the Advocacy Associates platform, how to craft your story, as well as tips for success!
  • Guide to Telling Your Story: This webinar offers recommendations on how to effectively share your story with lawmakers   
  • Guide to Social Media Advocacy: This presentation describes how you can get involved with social media advocacy and the importance online engagement
  • Guide to In-District Legislative Visits: Simplify the process of visiting with lawmakers by starting with this presentation!
  • Contacting Your Representatives: This link allows you to search for your representatives’ contact information.
  • Additional Resources on preparing for Hill visits and more 

 


Advocacy Prep Webinar

Advocacy Committee Co-chair Stephanie Bozarth presents a webinar on how to advocate on Capitol Hill.

View the Webinar

 


How-to Webinar: Guide to Telling Your Story

Whatever the situation and audience, your personal story is incredibly powerful. It’s essential that we learn how to tell our stories effectively. Maybe you’re talking to a lawmaker to urge them to fund MPS or related disease research; maybe you’re talking to a physician or a teacher about your child’s needs; or maybe you’re sharing your story with the public to raise awareness about MPS and related diseases. Do you want tools and easy strategies for telling your story in an effective way? Listen to the pre-recorded webinar below. The file may take a moment to download.

Watch the Webinar: Guide to telling your personal story effectively

Click Here to download the PowerPoint presentation.

Click Here to download the Work Sheet.

 


How-to 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? Review the PowerPoint presentation below for tools and tips.

Watch the Webinar: Using Social Media and Letters to the Editor Effectively for Advocacy

Click Here to download the PowerPoint presentation.

Click Here to download Tips for Using Social Media for Advocacy.

Click Here to download Tips for Using Letters to the Editor for Advocacy.

 


How-to Webinar: Guide to In-District Legislative Visits

Are you interested in meeting with your legislators to discuss the National MPS Society but aren’t sure how? Review the PowerPoint presentation below for tools and tips. 

Click Here to download the PowerPoint presentation.

 


Contact Your Representatives:

U.S. Senate

U.S. House

 


Additional Resources:

Contacting Your Members of Congress to Schedule a Meeting (pdf)

Strategies for Finding Information About Your Lawmaker (pdf)

Legislative Meeting Agenda (pdf)

Strategies for Building a Relationship with Your Lawmaker (pdf)

How to Tell Your Personal Story (pdf)

 

Information about MPS, ML, and the Society:

Fact Sheet – MPS Diseases (pdf)

Talking Points for Meetings with Lawmakers (pdf)

Our Mission

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

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