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Rare Disease Legislative Advocates

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Rare Disease Legislative Advocates

RDLA is a program of the EveryLife Foundation for Rare Diseases created in 2009 to support the advoc The bill was signed into law later that year.
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Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases created in 2009 to support the advocacy of all rare disease patients and organizations. RDLA is committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice to be heard by local, state and federal policy makers. RDLA provides free grassroots

advocacy resources such as action alerts, monthly webinars and newsletters and legislative scorecards. It also hosts a variety of educational events which are free to patients and caregivers. In 2012, 70 advocates traveled from around the country to participate in RDLA’s first Lobby Day event. They advocated in support of provisions that were later included in the Food and Drug Administration Safety and Innovation Act of 2012 (FDASIA). Over the years, Lobby Day has evolved into a series of events called Rare Disease Week on Capitol Hill. In 2019, more than 800 advocates participated. Events included a rare disease documentary screening, legislative conference, lobby day, Rare Disease Congressional Caucus Briefing, Rare Artist Reception and the National Institutes of Health Rare Disease Day.

09/01/2026

Apply for a Rare Giving Grant today! Rare Giving is a program of the EveryLife Foundation that supports organizations that engage patients, caregivers, and other stakeholders in the advocacy and public policy community.

Applications stay open until September 25, 2026.
Apply here: https://hubs.li/Q04w6l_00

09/01/2026

Today is the first day of Newborn Screening Awareness Month!

We are excited to kick off the month with words of wisdom from an expert in the newborn screening space. Dorothea C. Lantz, Director of Community Engagement at Prader-Willi Syndrome Association | USA, Founder & CEO of Florida Rare, and Chair of the Community Advisory Board for Florida Sunshine Genetics, shares what newborn screening means to her.

Join Dorothea and other experts at this year’s Newborn Screening Bootcamp in Washington, D.C. Visit our page to learn more and register! https://everylifefoundation.org/newborn-screening-take-action/newborn-screening-bootcamp/

Have questions about newborn screening? Comment below, and our staff will answer them later this month!

Keep an eye out for more resources, updates, and expert insights throughout Newborn Screening Awareness Month.

08/28/2026

Thank you to everyone who participated in Rare Across America 2026!

More than 500 advocates from 47 states, Puerto Rico, and Washington, D.C. took part in 265 meetings with Members of Congress.

Advocates across the country met with Senators and Representatives in their home states to support bipartisan rare disease legislation, including the Credit for Caring Act, Access to Genetic Counseling Services Act, Genomic Answers for Children’s Health, and the Scientific EXPERT Act.

Together, these rare disease advocates made an impact that will benefit the community for years to come!

08/25/2026

What questions do you have about newborn screening?

As August comes to an end, the EveryLife Foundation is gearing up for Newborn Screening Awareness Month! This September, we’ll be sharing a series of educational resources and updates on the newborn screening (NBS) policy space.

Have a question about ? Share it in the comments and help shape the information we provide to the rare disease community.

We look forward to answering your questions throughout September. Stay tuned for more interactive opportunities to learn!

07/29/2026

Join us today for the July RDLA Webinar at 2:00pm EST!

Congressional staff and policy experts will provide updates on several legislative proposals currently before Congress and the status of government funding bills for the next fiscal year starting on October 1.

Participating in Rare Across America? Don't miss this chance to hear more about two of the legislative asks in next month's meetings!

Click here to join: https://hubs.li/Q04r8yw-0

07/24/2026

This week, the Rare Disease Legislative Advocates hosted a Rare Disease Congressional Caucus Briefing on "Policy Solutions for Rare Diseases: Improving Access to Care, Treatment, and Community Supports."

We were joined by Carolyn Applegate, National Society of Genetic Counselors; Sarah Chamberlin, Flok Health; Maynard Friesz, Cure SMA; Jason Harris, National Psoriasis Foundation; and Shannon Wood, Dystrophy Association.

Our panelists highlighted the importance of improving access to community supports and caregiving, medical foods, telehealth and genetic counseling. They also discussed the need for stronger federal guardrails around the use of step therapy for rare disease patients.

Thank you to all of the advocates, congressional staff, and partners who joined us!

07/23/2026

Join us on Tuesday, July 29, 2026, 2:00–3:00 PM ET for the RDLA Monthly webinar: an overview of FY 2027 Appropriations and updates on rare disease policy proposals including the Scientific EXPERT Act, Access to Genetic Counselor Services Act, and Patients Deserve Price Tags Act.

Our speakers:
— Dylan Simon, EveryLife Foundation for Rare Diseases
— Maxwell Seltzer, Office of Sen. Roger Marshall
— Ruth McDonald, Office of Sen. Amy Klobuchar
— Carrie Haverty, National Society of Genetic Counselors

This briefing is a must for advocates, patients, and policy watchers who want to stay informed on the legislation shaping the rare disease community.

📌 Register here: https://hubs.li/Q04qBc3D0)https://hubs.li/Q04qBhP_0

07/21/2026

‼️ The FDA has launched "Rare Connections," a quarterly newsletter from the Rare Disease Innovation Hub designed to keep the rare disease community informed and connected with the latest updates across the FDA.

Each edition will feature updates on rare disease programs and initiatives, including new press releases, guidance documents, approvals, upcoming events, and personal stories from across the FDA.

We are grateful to the FDA for establishing this regular cadence of communication with the community. This is a valuable resource for the rare disease community to stay up to date on the latest developments at the FDA and learn about opportunities for engagement.

See the first edition of Rare Connections here: https://statics.teams.cdn.office.net/evergreen-assets/safelinks/2/atp-safelinks.html

Sign up for the newsletter here: https://public.govdelivery.com/accounts/USFDA/subscriber/new?topic_id=USFDA_1250

07/17/2026

LAST CALL: Today is the final day to register for Rare Across America! If you've been on the fence, this is your sign.

Rare Across America brings the rare disease community together nationwide to make our voices heard where it matters most: in front of our lawmakers. Meetings will be scheduled virtually and in-person between August 10-21

Already registered? Drop your state in the comments below! Let's see how many states show up strong this year! 👇

🔗 Not registered yet? Link in bio, or click link below, but hurry, registration closes TODAY.

https://hubs.ly/Q04pWm6K0

Every voice counts. Every state matters.

07/14/2026

Join us on July 22 for a Rare Disease Congressional Caucus Briefing. Policy Solutions for Rare Diseases: Improving Access to Care, Treatment, and Community Supports

Hosted by Rare Disease Legislative Advocates in partnership with the Rare Disease Congressional Caucus, this briefing brings together leading voices to discuss the policy changes our community needs most.

Speakers:
- Carolyn Applegate, MGC — Johns Hopkins Medicine
- Sarah Chamberlin — flok Health
- Maynard Friesz — Cure SMA
- Jason Harris — National Psoriasis Foundation
- Shannon Wood — Muscular Dystrophy Association

Note: Each participant must register individually with their own unique email address. Register here: https://everylifefoundation.org/rare-advocates/rarecaucus/rarecaucus-briefings/?utm_content=382440565&utm_medium=social&utm_source=facebook&hss_channel=fbp-188286367849015 -id-1

Address

1012 14th NW, Suite 500
Washington D.C., DC
20005

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Website

http://www.rareadvocates.org/

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