Congratulations Advocates on Over 300 Rare Across America Meetings!

Thank you to the nearly 600 rare disease advocates who participated in meetings with their federal legislators during the August recess this summer! There were 303 meetings with Members of Congress or their staff in 49 states plus the District of Columbia. This is our highest turnout yet for our in-district meetings program, Rare Across America!

Rare disease advocates from around the country spoke to their legislative officials and their staff on important rare disease issues. Due to the advocates meetings and hard work, we saw the following results!

A Rare Disease Burden Study included in the Senate Appropriations Committee Bill: The Senate Appropriations Committee included language to direct the GAO to study what is known about the total impact rare diseases have on the U.S. economy, including direct medical costs, non-medical costs, loss of income, and the societal consequence of undiagnosed and untreated rare disease. Once passed into the law, the GAO will provide a report within two years.

Six New Cosponsors of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507/S. 2158: Reauthorize critical existing federal programs that provide assistance to states to improve and expand their newborn screening programs, support parent and provider education, ensure laboratory quality and effective surveillance. More info here.

New cosponsors: Senators Tammy Baldwin (WI), Robert Casey (PA), Amy Klobuchar (MI), Martha McSally (AZ), Krysten Sinema (AZ), and Debbie Stabenow (MI)

12 New Members of the Rare Disease Congressional Caucus. The caucus now has 132 members in the U.S. House of Representatives and 22 in the Senate. Click here to invite your legislators to join the bipartisan Caucus.

New Members: Representatives Sean Casten (IL), Steve Chabot (OH), James Comer (KY), Jason Crow (CO), Kevin Hern (OK), Chris Pappas (NH), Max Rose (NY), Darren Soto (FL) and Senators Edward Markey (MA), Gary Peters (MI), Debbie Stabenow (MI), and Tina Smith (MN)

25 New Cosponsors of the Lymphedema Treatment Act, H.R. 1948/S. 518: Proposes to provide Medicare coverage of lymphedema compression treatment items.

New cosponsors: Senators Lindsey Graham (SC), Maggie Hassan (NH), Rick Scott (FL) and Representatives Anthony Brown (MD), Ken Calvert (CA), Salud Carbajal (CA), Judy Chu (CA), Henry Cuellar (TX), Elijah Cummings (MD), John Curtis (UT), Sharice Davids (KS), Dwight Evans (PA), Jesus Garcia (IL), Josh Gottheimer (NJ), John Larson (CT), Donald McEachin (VA), Donald Payne (NJ), Michael Simpson (ID), Elissa Slotkins (MI), Bryan Steil (WI), Dina Titus (NV), David Trone (MD), Lauren Underwood (IL), Maxine Waters (CA), Randy Weber (TX)

53 New Cosponsors of the Ensuring Lasting Smiles Act, H.R. 1379/S. 560: Proposes to require private health insurance to provide coverage of medically necessary treatments of congenital anomolies including dental services.

New cosponsors: Senators Benjamin Cardin (MD), Steve Daines (MT), Kamala Harris (CA), Doug Jones (AL), Martha McSally (AZ), Pat Roberts (KS) and Representatives Jahana Hayes (CT), Darin LaHood (IL), Michael Guest (MS), Suzanna Bonamici (OR), Trent Kelly (MS), Paul Cook (CA), William Keating (MA), Ro Khanna (CA), Stephen Lynch (MA), Nita Lowey (NY), Doug Lamborn (CO), John Larson (CT), Grace Napolitano (CA), Donald Norcross (NJ), Adriano Espaillat (NY), John Sarbanes (MD), Rashida Tlaib (MI), Scott Peters (CA), Mikie Sherrill (NJ), Suzan DelBene (WA), Adam Schiff (CA), Bradley Schneider (IL), Dwight Evans (PA), Lori Trahan (MA), Tom Cole (OK), David Price (NC), Frank Lucas (OK), Katherine Clark (MA), Mark Meadows (NC), Daniel Lipinski (IL), Madeleine Dean (PA), Antonio Delgado (NY), Sharice Davids (KS), Michael Waltz (FL), Andy Harris (MD), Cathy McMorris Rodgers (WA), Zoe Lofgren (CA), Dina Titus (NV), Cedric Richmond (LA), Theodore Deutch (FL), Jim Banks (IN), Doug Collins (GA), Cheri Bustos (IL), Ross Spano (FL), Mike Bost (IL), and James Comer (KY), Jerry McNerney (CA)

8 New Cosponsors of the Medical Nutrition Equity Act, H.R. 2501: Proposes to require private health insurance, Medicare, and Medicaid to provide coverage of medically necessary food for digestive and inherited metabolic disorders.

New cosponsors: Representatives Earl Blumenauer (OR), Rick Larsen (WA), John Moolenaar (MI), Joe Neguse (CO), Dean Phillips (MN), John Rutherford (FL), Kim Schrier (WA), Chris Stewart (UT)

Thank you!

Thank you again to all the advocates who participated in Rare Across America meetings this summer and continue to build relationships with Members of Congress. If you have not already, please take the time to follow up on your meetings by emailing the staffer you met with and thank them for the meeting and repeat your ask.

Please save the date for Rare Disease Week on Capitol Hill on February 25th to 28th, 2020 in Washington, DC. Rare Disease Week attracts hundreds of patient advocates from around the country to Washington, DC for a week of events dedicated to empowering patients, families, and friends to become legislative advocates. Advocates will have an opportunity to meet with Members of Congress and learn best practices for successful advocacy. No advocacy experience required. The travel stipend application for Rare Disease Week is open. Deadline to apply for a travel stipend is December 2, 2019. You can apply here. Registration for Rare Disease Week on Capitol Hill opens on January 3, 2020 at

Travel Stipend Application Open for Rare Disease Week on Capitol Hill 2020

We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020! Rare Disease Week on Capitol Hill brings rare disease community members together to learn about federal legislative issues, meet other advocates, and share their rare stories with legislators.

The travel stipend application for Rare Disease Week on Capitol Hill 2020 is now open! Please find the application here.

In order to enable more advocates to attend, the EveryLife Foundation will offer a limited number of travel stipends. Stipend awardees in Maryland and Virginia will receive $400; awardees in Alaska, Hawaii, North Dakota, and Puerto Rico will receive $1000; and awardees from the other 45 states will receive $800.

Stipend recipients are required to attend the Legislative Conference on February 26th and the Hill Day on February 27th but may attend the other events as well. Only one person from a family can be awarded a travel stipend.

The Application deadline to apply for a Rare Disease Week on Capitol Hill 2020 Travel Stipend is December 2nd, 2019. All advocates that apply will be notified by December 20th, 2019.

*Any young adult under the age of 18 who receives a travel stipend must travel with an adult chaperone.

For more information on the events during Rare Disease Week on Capitol Hill 2020, please visit

RareVoice Awards Nominations Closing Soon

The RareVoice Awards nominations for 2019 are open! We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders, having passed or supported legislation for the rare disease community at the state and federal level. There is even a category for teenagers/young adults who have made a big impact.

The RareVoice Awards nominations will close on Friday, August 30th. Please submit your nominees for the RareVoice Awards at

The RareVoice Awards celebration will take place on December 4, 2019 to honor advocates who give rare disease patients a voice on Capitol Hill. Patient advocates, industry executives, and Congressional and government agency staff gather to honor these outstanding advocates for the rare disease community. 2019 will mark the 8th year of the RareVoice Awards, which will be held at the Arena Stage in Washington, DC.

Award recipients are chosen by committee from nominations received from the rare disease community. Awardees receive an “Abbey” statuette commissioned specially for the RareVoice Awards, and named for Abbey Meyers, founder of the National Organization for Rare Disorders (NORD). This is a free and widely attended event.

If you have any questions about the RareVoice Awards, please contact Shannon at

RDLA Announces Rebrand of In-District Lobby Days to Rare Across America

Rebrand reflects program’s evolution and commitment to the patient voice

The Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, today announced the rebranding of its In-District Lobby Days program, which will now be called Rare Across America. The rebrand reflects the program’s evolution and reinforces the RDLA’s commitment to providing resources and opportunities for rare disease advocates, thereby impacting public policy. In addition, the refresh better positions the program as an extension of Rare Disease Week on Capitol Hill, an annual legislative advocacy event attracting more than 800 advocates to the nation’s capital.

“Changing public policy is a year-round commitment. We must keep the momentum going,” says Julia Jenkins, the EveryLife Foundation for Rare Diseases Executive Director. “Rare Across America is a great way to connect patients and their care givers to Members of Congress in their home districts, where they can build powerful relationships.”

In addition to a new name and logo, the program has adopted a new tagline, “Every voice, in every district, matters,” underscoring the power of patient engagement.

Under the Rare Across America program, RDLA staff organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The meetings take place in the Member’s district office during the month of August, while Congress is in recess from July 29th to September 8th, 2019. The RDLA team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars. No prior advocacy experience is necessary.

Advocates interested in participating should register between May 8th and July 3rd at

The first training webinar for registered advocates, entitled “What to Expect at Your Meetings,” will be hosted on July 25th.

About Rare Disease Legislative Advocates
The 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. The 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.


Biggest Rare Disease Week on Capitol Hill Ever!

Thank you to the more than 800 rare disease advocates who traveled from 49 states plus the District of Columbia to join us during Rare Disease Week on Capitol Hill 2019, which took place February 24th – 28th! Four-hundred and fifty of these advocates participated in 298 meetings with Members of Congress to bring our message: […]

Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely

We are excited so many advocates will be joining us in DC for Rare Disease Week on Capitol Hill. For those who are not able to travel to Washington, DC, there are a number of ways to participate from your own home! Please feel free to share with your family and friends too! Below are five ways you can make your voice heard during the week’s events.

Monday: Watch the livestream of the Legislative Conference on Monday, February 25th to learn about key legislation affecting the rare disease community. The draft agenda is available here, and you can register for the free livestream here.

Tuesday: Call or email your Members of Congress on Lobby Day on Tuesday, February 26th. The one-page background papers for each of the key legislative issues discussed at the Legislative Conference will be available here prior to Rare Disease Week. You can review them and decide which you might want to ask your Members of Congress to support. You can find more information on calling and emailing your Senators and Representative here.

Wednesday: On Wednesday, February 27th, join our Rare Disease Congressional Caucus briefing from 2:00 pm – 3:00 pm EST. Titled “Rare Disease 101”, this briefing will provide insights on rare diseases and its’ impact on rare disease patients and their families. Register for the free livestream here.

Thursday: Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH) on Thursday, February 28th. The agenda and link to register are available on the NIH website. Speakers include leaders from NIH and the Food and Drug Administration (FDA), as well as representatives from a number of patient advocacy groups.

Social media: Stay engaged with our acitivites by connecting with us on Facebook, Twitter and Instagram. On Twitter, we are @RareAdvocates; on Instagram @Rare_Advocates. For posts related to Rare Disease Day or your own advocacy efforts, be sure to use our event hashtag, #RareDC2019, and to tag RDLA in your posts.

We hope that you will take part in these remote participation opportunities! If you have questions regarding any of these events, please email Shannon von Felden at

Top 5 Reasons Why YOU Should Join Us for Rare Disease Week on Capitol Hill 2019!

1.) Learn about policy issues that impact you at the Legislative Conference.

2.) Share your unique story with members of Congress during Lobby Day, which is kicked off at our Lobby Day Breakfast.

Read more

Get Ready for Rare Disease Week on Capitol Hill 2019

Rare Disease Legislative Advocates (RDLA) will bring together over 500 patient advocates in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 24-28, 2019, advocates will have an opportunity to meet with Members of Congress and learn best practices for successful advocacy.

Rare Disease Week on Capitol Hill 2019 kicks off on February 24th with a documentary screening and cocktail reception.

Patient advocates will attend the all-day Legislative Conference on February 25th to learn about federal legislation and policies that affect the rare disease community. Policy experts from Capitol Hill and non-profit organizations will share their expertise with advocates. In addition, advocacy professionals will teach attendees how to be effective advocates on the Hill and build strong relationships with their Members of Congress.

On February 26th, a Lobby Day breakfast will be held with keynote speakers. After breakfast, 500 rare disease advocates will go to Capitol Hill to meet with their Senators, Representatives, and Congressional staffers to discuss key legislation, policies and the Rare Disease Congressional Caucus.

The next day, the Rare Disease Congressional Caucus will host rare disease advocates and Congressional staffers for a lunch briefing on February 27th. Later in the evening, the Rare Artist Reception will feature the 2018 Rare Artist contest winning artwork and highlight the importance of art as therapy for rare disease patients.

We will close out the week at NIH in Bethesda, Maryland. On February 28th, the NIH will host Rare Disease Day at NIH. This event aims to raise awareness about rare diseases, the people they affect, and NIH research collaborations to advance new treatments. The EveryLife Foundation will be there to meet patients and provide information on their programs as well.

RDLA offers travel stipends to participants to offset the cost of attending Rare Disease Week on Capitol Hill. Stipend awardees in Maryland and Virginia will receive $400, and awardees in the rest of the continental United States will receive $800. Stipend awardees in Alaska, Hawaii, and Puerto Rico will receive $1000.

Two stipends will be awarded per state and limited to one per family. Stipends are prioritized to have a diverse representation of rare diseases and for those who have not attended Rare Disease Week or received a stipend in the past. The 2019 travel stipend application is open until December 14th, 2018 and can be found at Applicants will hear by December 21st whether they will receive a travel stipend or have been placed on the waiting list.

Registration for Rare Disease Week on Capitol Hill begins on January 3, 2019. A hotel room block has been organized at the Washington Court Hotel in Washington, DC between February 24th and 28th for $219 per night. Attendees can contact the Washington Court Hotel directly and make a reservation with the “EveryLife Foundation” room block to reserve with this rate.

Information on Rare Disease Week on Capitol Hill 2019, the travel stipend application, and registration for the event can be found at

We are excited for this powerful week of events and to continue to advocate with the rare disease community.

Stay Informed! Get the Lowdown on 2018 Elections

Heading in to election season, it’s important that the rare disease community’s voice is heard at the state and federal levels. To ensure our continued success, RDLA has put together a collection of resources to help advocates register to vote, know where their representatives stand on rare disease-related issues, and know about ballot initiatives that could affect the rare disease community.

  • – This non-partisan site finds voter requirements for your state and helps you get registered.
  • RDLA’s Legislative Scorecards – These scorecards list the voting record of your Members of Congress, offering a cumulative grade based on their support of recent federal legislation. If your representative doesn’t have a great track record on rare disease issues, In-District Lobby Days takes place from July 31st – September 4th, giving you a chance to speak with your legislator’s local office and encourage them to better support issues affecting rare disease patients.
  • Rare Disease Congressional Caucus – A great way to tell if your representatives support the rare disease community is to see if they’re a member of the Rare Disease Congressional Caucus. The caucus convenes quarterly to inform Congressional offices about issues affecting rare disease patients.
  • RARE on the Road – A partnership between the EveryLife Foundation and Global Genes, this tour of leadership events offers education on legislation currently being considered by Congress and an opportunity to meet other rare disease advocates in your local area. For those looking to move the needle on rare disease legislation or get an idea of how their representatives will vote on upcoming issues, RARE on the Road is a must-attend. Events will be hosted in Houston, Salt Lake City and Nashville this summer. For more information and to register, visit the RARE on the Road website.
  • – Hosts information on elections for state and local officials.  Don’t know where your state representatives stand on rare disease issues? Check to see if your state has a rare disease caucus, or call your state representative’s office and ask for their stance on legislation affecting rare disease patients. RDLA provides tools to help advocates find the contact information for most of their elected officials.
  • NORD State-by-State Report Cards – The National Organization for Rare Disorders (NORD) has comprised this useful guide offering state-by-state insights on medical food coverage, newborn screening, Medicaid elegibility and other issues that affect rare disease patients and their families.
  • Ballot Inititatives – Based on your location, there may be local ballot initiatives that could affect the rare disease patient in your life. Ballotpedia provides neutral analysis of ballot initiatives at the state and local level so voters step in to the booth with the most information possible.

Notice a valuable voter resource that’s missing?  Email Grant Kerber at and we’ll add it to this page. Let’s make a difference in 2018!

Rare Disease Week on Capitol Hill 2018 Brings Hundreds of Advocates to Capitol to Educate Congress

Thank you to the 750+ rare disease patients, caregivers, researchers and other advocates who joined us during Rare Disease Week on Capitol Hill 2018, which took place February 25th through March 1st.

The week kicked off on Sunday evening at our 8th annual Rare Disease Documentary Screening and Cocktail Reception. The capacity crowd was treated to a screening of The Ataxian, which follows the journey of Freidreich’s Ataxia patients Kyle Bryant and Sean Baumstark as they bike across the United States. Following the screening, Kyle and Sean were on-hand to take questions from the crowd, with topics ranging from their lives with Freideich’s Ataxia to the filmmaking process.

On Monday, more than 450 advocates joined us in-person for the Legislative Conference, with more than 125 participating remotely through the event livestream. Experts from Capitol Hill and patient advocacy organizations discussed what to expect from Congress following changes to the Orphan Drug Tax Credit, how to build effective relationships with Members of Congress and their staff, and key pieces of legislation for 2018. Video and presentations will be available on the Legislative Conference resource page.

Tuesday morning, advocates began Lobby Day at breakfast with remarks by Joel White, Founder and President of Horizon Government Affairs. Mr. White was followed by Dr. William Gahl, Head of the Undiagnosed Diseases Program at the National Institutes of Health (NIH) and Debra Lewis, who serves as Acting Director of the Food and Drug Administration’s Office of Orphan Product Development. Advocates left the breakfast energized by the speakers and ready to educate Members of Congress and their staff about issues affecting the rare disease community.

And educate they did! In all, 371 advocates representing 49 states participated in a total of 294 Lobby Day meetings, discussing the Rare Disease Congressional Caucus, precision medicine legislation, incentives for rare disease drug development and other key legislative topics. Thanks to these advocacy efforts, the Rare Disease Congressional Caucus picked up 4 new members in the Senate and 9 in the House.

Wednesday’s events began with a Rare Disease Congressional Caucus briefing, titled “The Rare Disease Lifecycle: Diagnosis to Treatment.” Caucus Co-Chair Representative Leonard Lance (R-NJ) welcomed advocates and Congressional staff before our expert panel covered several topics affecting the rare disease community. Videos from the briefing are available here.

On Wednesday evening, we hosted the annual Rare Artist reception, which featured winning entries from the 2017 Rare Artist contest.  We were honored to have seven awardees in attendance speak about the importance of art as therapy and the struggles they experience as rare disease patients. Also on display were photographs from Rick Guidotti’s Positive Exposure campaign, which put the beauty of rare disease patients on display for all to see.

We closed the week at the NIH, where EveryLife staff was on hand to meet attendees and provide information about our programs assisting the rare disease community.

After another successful year, we want to thank everyone who participated in Rare Disease Week on Capitol Hill in-person and remotely.  Your support and appreciation means the world to us.  We hope to see even more of our vibrant community in 2019!

Follow Rare Disease Legislative Advocates on Twitter and Facebook for news on upcoming events.