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: […]
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 rareadvocates.org/rdw. 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 rareadvocates.org/rdw.
We are excited for this powerful week of events and to continue to advocate with the rare disease community.
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!
We know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare Disease Week on Capitol Hill remotely. Below are five ways you can make your voice heard during next week’s events.
- Monday: Watch the livestream of the Legislative Conference on Monday, February 26th 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 your Members of Congress on Lobby Day on Tuesday, February 27th. 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 contact information for your elected officials here.
- Wednesday: On Wednesday, February 28th, join our Rare Disease Congressional Caucus briefing via livestream from 12:30 – 1:45 PM EST. Titled “The Rare Disease Lifecycle: Diagnosis to Treatment”, this briefing will provide insights on a number of steps in a rare disease patient’s journey.
- Thursday: Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH) on Thursday, March 1st. 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’re @RareAdvocates; On Instagram, we’re @Rare_Advocates. For posts related to Rare Disease Day or your own advocacy efforts, be sure to use our event hashtag, #RareDC2018, 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 Grant Kerber at firstname.lastname@example.org.
Legislative Conference livestream presented by
Thank you to our 2018 sponsors.
We are excited to host patients, caregivers, physicians and other advocates from across the country at Rare Disease Week on Capitol Hill, which will take place from February 25th through March 1st, 2018. There is much work to do to educate members of the U.S. House of Representatives and Senate on the impact of rare disease on patients and families in their districts.
The EveryLife Foundation for Rare Diseases will provide travel stipends through its Rare Giving program to enable advocates from across the country to participate. In order to receive a stipend, advocates must attend the Legislative Conference and Lobby Day. Stipends are $400 for Maryland and Virginia, $800 for the rest of the continental U.S., and $1,000 for Alaska, Hawaii and Puerto Rico. They are limited to one per family.
Applications are available online through December 10th, and all applicants will be notified by December 18th whether they will receive a stipend or are on the waitlist. This year, close to $75,000 in stipends was awarded to 95 advocates from 48 states!
The schedule of events, details on the hotel room block and additional information is available on the Rare Disease Week on Capitol Hill webpage. Registration will open on January 3, 2018.
Facebook and Twitter provide opportunities to engage state and federal policymakers as well as other rare disease advocates who can take action on their own and/or increase the reach of your message.
You can find a list of Twitter handles for U.S. Senators here, and another for members of the U.S. House of Representatives here. The National Conference of State Legislatures has a list of state legislative social media websites that is available here.
How can YOU use social media? Below are several examples. For all of them, make sure to tag your legislators on Facebook and use their official Twitter handles to make sure they see your posts.
- Encourage your legislators to support or oppose specific legislation, and thank them when they do.
- Are your Representative and Senators members of the Rare Disease Congressional Caucus? Tweet to thank them if they are or ask them to join if they are not, and post a respectful request on their Facebook pages.
- Thank legislators (or their staff) for meeting with you, especially if they agree to something you requested such as supporting legislation. Take a photo to include in your post, if possible.
- Use your Twitter account to ask your followers to take action. Retweet action alerts from other organizations that you support in order to expand the number of people who see it and participate.
- You can also increase the number of people who participate in action alerts by sharing them on Facebook. Rare disease advocacy organizations rely on help from individual advocates who not only take action, but call on their friends and family to do so as well.
Emily Eckland, Digital and Social Media Communications Manager for Eli Lilly & Company, discussed Best Practices for Staying in Touch and Social Media to Build Momentum at the Legislative Conference during Rare Disease Week on Capitol Hill. The video of her presentation is available on the Legislative Conference resource page.
The Rare Disease Congressional Caucus hosted a briefing during Rare Disease Week on Capitol Hill which focused on Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform.
After welcoming remarks from Caucus Co-Chair Senator Amy Klobuchar (D-MN), the panelists addressed implementation of the 21st Century Cures Act, reauthorization of the Prescription Drug User Fee Act, efforts to repeal and replace the Affordable Care Act, new models for rare disease drug development such as repurposing, and the role of incentives to encourage the development of orphan therapies.
Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us for at least one event during Rare Disease Week on Capitol Hill in Washington, DC from Monday, February 27th, through Thursday, March 2nd.
The week began at the National Institutes of Health (NIH), where the EveryLife Foundation’s Chief Advocacy and Science Policy Officer presented an update on our work to improve the state newborn screening system and create incentives to encourage biopharmaceutical companies to repurpose approved medicines for rare diseases.
That evening, we hosted a cocktail reception, screening of the documentary Up for Air, and panel discussion. Senator Ed Markey (D-MA) and Representative Jim McGovern (D-MA) made brief remarks.
Aproximately 350 advocates joined us for the Legislative Conference on Tuesday, which was livestreamed for the first time. Experts from Capitol Hill and patient advocacy organizations discussed what to expect from the new Congress and Trump Administration, how to build effective relationships with Members of Congress and staff, and key legislation. Video and presentations will be available on the Legislative Conference resource page.
Advocates began Lobby Day at breakfast with remarks by Dr. Janet Woodcock, Director of the Food and Drug Administration’s Center for Drug Evaluation and Research, as well as Representative Gus Bilirakis (R-FL) and former Representative Brian Baird (D-WA), who urged advocates to be brief, polite and persistent in their meetings with Members of Congress and staff.
328 rare disease advocates participated in 270 Lobby Day meetings, discussing the Rare Disease Congressional Caucus, healthcare reform, incentives for rare disease drug development and other key legislative topics.
On Wednesday evening, we hosted the annual Rare Artist Reception which featured winning entries from the 2016 contest and remarks from several of the artists.
The final event of the week was a Rare Disease Congressional Caucus briefing entitled, ” Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform.” Caucus Co-Chair Senator Amy Klobuchar (D-MN) welcomed advocates and Congressional staff. Video will be posted on the Caucus webpage within a few weeks.
We are very excited to host more than 600 rare disease patients, caregivers and other advocates from across the country next week in Washington, DC.
- Visit the websites of your Representative and both Senators to learn more about them and find possible points of connection. Not sure who they are? You can find out here. While you’re there, sign-up for their newsletters so you can learn about district office hours and town halls.
- View the issue briefs for the legislative asks to be discussed at the Legislative Conference which are available here. You’ll have the opportunity to ask questions of the experts at the Legislative Conference.
- Practice your personal story. If you are in a large group of advocates in Senate meetings, you may only have 2-3 minutes so be concise. Think about how it might tie-in to your ask (such as more funding for research). If there is no treatment for your rare disease or if you use medicines off-label, you might want to mention that.
- Download the list of events during Rare Disease Week on Capitol Hill with locations and Metro stops. We also recommend that you print your hotel confirmation and flight/train/bus details.
- Print a map of the DC Metro and/or download a ride-sharing app such as Uber or Lyft.
- Check the weather and pack appropriately. It looks like you may need an umbrella but can leave your snow boots at home!
Safe travels, and we look forward to seeing you next week!
If you are not able to join us and advocates from across the country at Rare Disease Week on Capitol Hill on February 27th through March 2nd, you can still make your voice heard on Capitol Hill and participate in some of the programming.
Here are four ways you can participate remotely:
- Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH) on Monday, February 27th. The agenda and link to register are available on the NIH website. Speakers include representatives from Global Genes, EveryLife Foundation for Rare Diseases and FasterCures as well as leaders from NIH and the Food and Drug Administration (FDA). If you are on social media, use the hashtag #RDDNIH to be part of the conversation.
- Watch the livestream of the Legislative Conference on Tuesday, February 28th, to learn what to expect from the new Congress and Trump Administration, how to build an effective relationship with Members of Congress and staff, and about key legislation for the rare disease community. The draft agenda, link to register for the free livestream and legislative issue briefs are available here. If you are on social media, use the hashtag #RareDC2017 to quote speakers, comment and ask questions.
- Call your Members of Congress on Lobby Day on Wednesday, March 1st. The one-page background papers for each of the key legislative issues discussed at the Legislative Conference are available here. You can review them and decide which you might want to ask your Members of Congress to support. You can find contact information for your elected officials here.
- Email your Members of Congress on Lobby Day on Wednesday, March 1st. Chose the current RDLA action alerts you support. We make it easy for you to send an email to your legislators. You can ask them to join the bipartisan Rare Disease Congressional Caucus, which hosts quarterly briefings on Capitol Hill to raise awareness and educate Members and staff.
Please join us to help educate the new Congress and shape healthcare policy to better meet the needs of the rare disease community!