Rare Disease Legislative Advocates

Share your Medicaid story!

‼️ Do you have a Medicaid story to share?

As part of the EveryLife Foundation for Rare Diseases' ongoing initiative to protect the rare disease community’s access to Medicaid, we are asking advocates to share your Medicaid stories in your home state. We are continuing to collect at least two stories per state and territory to use for our efforts to retain Medicaid funding. Your story will be archived for future use in social media, communications with state legislatures, and even in pieces shared with news outlets. Of course, if we want to use your story, we will reach out before anything is shared publicly, and you will have final approval of what is included. Please be sure to include your contact information so we can streamline the approval process.

Scan the QR code or click here to share your story ➡️ https://everylifefoundation.quorum.us/campaign/145923/

Final Day to Apply for the Virtual Youth and Teen Advocacy Day!

RDLA invites members of the rare disease community between 10 and 18 years old with a connection to rare diseases to participate in this amazing opportunity. Advocates will meet virtually with their Members of Congress and share their rare disease story.

Prior to these meetings, participants will attend virtual trainings on how Congress creates laws, how to use their voice and share their story with legislators, and how to understand key issues affecting the rare disease community, designed for youth and teens.

Registration closes today, May 22. Register now using the following link: https://hubs.li/Q04hvF_n0

Reminder! 🎨✨

Join us this Thursday, May 21, at 2 PM ET for an RDLA Share Your Story webinar. Hear from rare artists DaNice Marshall, Zanny Nicholas, and Solana Acuna as they discuss how art can be used to share personal stories and experiences.

Attendees will also participate in a Q&A session and an interactive artist statement activity led by Stephanie Riordan, our Senior Director of Patient Programs. Please have paper and writing utensils or a digital tablet ready for the workshop portion.

We look forward to seeing you there!

Register now: https://hubs.li/Q04h5-Hh0

Register today!

Join us on Thursday, May 21, at 2 PM ET for an RDLA Share Your Story webinar. Attendees will learn how to share their story through art.

Three rare artists will lead the conversation:

DaNice Marshall, In Someone Else’s Shoes
Zanny Nicholas, Alive Again
Solana Acuna, PrismOfLove

In addition to the presentation, there will be a Q&A session with the rare artists, and a segment about how to write your artist statement with Stephanie Riordan, our Senior Director of Patient Programs. For Stephanie’s segment, please have paper and writing utensils or a digital tablet for this activity.

We look forward to seeing all of you there! Please register here: https://hubs.li/Q04gQDqM0

Registration for Rare Across America 2026 is officially open! Meet with your Members of Congress virtually and at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story.

Meetings will take place from August 10 to 21, and registration closes on Friday, July 17. Make an impact in your community at

Register here: https://hubs.li/Q04gcT8F0

Become a mentor today!

Apply now to be a part of the RDLA Advocacy Mentorship Program. Advocates with any level of experience can apply. The program is a year-round support system for advocates seeking more 1:1 assistance in their advocacy development and allows experienced advocates to hone their leadership skills.

Apply here: https://hubs.ly/Q04f7fDd0

Registration Open Now!

Registration for virtual Youth and Teen Advocacy Day is now open. RDLA invites members of the rare disease community between 10 and 18 years old with a connection to rare diseases to participate in this amazing opportunity. Advocates will meet virtually with their Members of Congress and share their rare disease story.

Prior to these meetings, participants will attend virtual trainings on how Congress creates laws, how to use their voice and share their story with legislators, and how to understand key issues affecting the rare disease community, designed for youth and teens.

Registration closes on Friday, May 22. Register now using the following link: https://hubs.li/Q04dPfJd0

Register now!

Join us on Thursday, April 23, at 2 pm ET for the latest RDLA Monthly Webinar. Featuring three insightful speakers, this session will provide an overview of home and community services and two rare disease-related bills.

Amy Aikins, the Director of the Rare Access Program at the EveryLife Foundation, will open the session with an overview of home and community-based services. Then, Zachery Newman, a Senior Policy Advisor at the Office of Representative Josh Gottheimer, will discuss Cameron’s Law (H.R. 1414). Finally, Max Karlin, a Senior Legislative Assistant at the Office of Representative Brett Guthrie, will discuss Medicaid VBPs (Value-Based Pricing) for Patients (MVP) Act (S. 1637/H.R. 7871).

Register for the webinar using the following link: https://hubs.li/Q04c-z8h0

Calling all advocates in North Carolina!

Join RDLA in Raleigh, North Carolina, on May 18-19 for the latest Rare Disease State Advocacy Day. This event is an opportunity for rare disease advocates to make their voices heard with state legislators, advancing policy priorities of the rare disease community. The deadline to register is April 24.

Let’s make a difference together! Register for the event using the following link: https://hubs.li/Q04cPcBd0

Register today!

Join us next Thursday, March 26, at 2 pm ET for the latest RDLA Monthly Webinar. This session will cover recent rare advocacy updates during and following , and review appropriations priorities and recently introduced rare disease-related bills.

The EveryLife Foundation’s Senior Vice President of Policy and Advocacy, Jamie Sullivan, will discuss recent rare disease advocacy activities during and following Rare Disease Week. Then, our Senior Director of Policy, Dylan Simon, will review the FY 2027 appropriations process and priorities. Our guest speakers will share two recently introduced bills. Victoria Gemme, a Director at Leavitt Partners, will discuss the Genomic Answers for Children’s Health Act, H.R. 7118. Sarah Chamberlin, the Founder & Chief Program Officer at Flok Health, will review the Medical Foods and Formulas Access Act, H.R. 5684/S. 3304.

Register for the webinar using the following link: https://hubs.li/Q047pTfF0