Rare Disease Week on Capitol Hill Engaged 600+ Advocates

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.

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

How to Prepare for Success at Rare Disease Week on Capitol Hill

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.

As we discussed in a webinar earlier this month on Rare Disease Week on Capitol Hill, there are a few things you can do to prepare to ensure a productive experience and minimize last-minute stress:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. Print a map of the DC Metro and/or download a ride-sharing app such as Uber or Lyft.
  6. 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!

Four Ways to Participate Remotely in Rare Disease Week on Capitol Hill

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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!

Sign up to receive news from Rare Disease Legislative Advocates to ensure that you don’t miss any updates on Rare Disease Week on Capitol Hill! You can also follow us on Twitter and Facebook.

Registration Now Open for Rare Disease Week on Capitol Hill

Join fellow rare disease patients, caregivers and other advocates from across the country at Rare Disease Week on Capitol Hill from February 27th through March 2nd, 2017. This is an opportunity for YOU to help educate the new Congress and shape healthcare policy to better meet the needs of the rare disease community.

All of the events are free for rare disease advocates, but advance registration is required for each.

Monday, February 27th, 8:30am-4pm: Rare Disease Day at the National Institutes of Health (NIH)
You can attend in-person or watch via livecast, and registration is available on the NIH website.

Monday, February 27th, 5:30-9:30pm: Cocktail Reception and Rare Disease Documentary Screening presented by Vertex featuring Up for Air at the Naval Heritage Center
Registration is available HERE.

Tuesday, February 28th, 9am-5pm: Legislative Conference presented by Horizon Pharma at FHI 360. Registration closed on February 12th.

Wednesday, March 1st, 7:30-8:30am: Lobby Day Breakfast at Hyatt Regency on Capitol Hill. Registration is now closed.

Wednesday, March 1st, 9am-5pm: Lobby Day Meetings with Members of Congress on Capitol Hill. Registration closed on February 12th.

Wednesday, March 1st, 5-7pm: Rare Artist Reception at the Kennedy Caucus Room of the Russell Senate Office Building
Registration is available HERE.

Thursday, March 2nd, 12-1:30pm: Rare Disease Congressional Caucus Briefing in Room 902 of the Hart Senate Office Building
Registration is available HERE.

For more information on Rare Disease Week on Capitol Hill including the introductory webinar held last month and a link to register for the next webinar on February 8th, please visit http://rareadvocates.org/rdw/.

Sign up to receive news from Rare Disease Legislative Advocates to ensure that you don’t miss any updates on Rare Disease Week on Capitol Hill! You can also follow us on Twitter and Facebook.

Webinar Provides Overview of Rare Disease Week on Capitol Hill 2017

 

Rare Disease Legislative Advocates recently hosted a webinar which provided an overview of Rare Disease Week on Capitol Hill, to be held February 27th through March 2nd, 2017 in Washington, DC.  The week of events brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. There will be new Members of the House and Senate next year, and it is critical for them to meet members of their communities affected by rare disease.

All of the events are free for patient advocates, and registration will open on January 4th.

Not Able to Attend? Submit Your Unique Perspective to be Hand-Delivered to Congress

We want every Member of Congress to hear from constituents affected by rare disease, and you can make your voice heard even if you can’t join us in person. Please share your unique perspective and let your legislators know what issues matter most to you by filling out our online form by February 12th so that we can hand-deliver it on Lobby Day.

Check the Rare Disease Week on Capitol Hill webpage for more information and updates.

Travel Stipends for Rare Disease Week on Capitol Hill Increased!

The EveryLife Foundation for Rare Diseases will provide travel stipends to enable advocates from across the country to participate in Rare Disease Week on Capitol Hill, to be held February 27th through March 2nd, 2017.

Thanks to a generous donation to our Rare Giving program by Horizon Pharma, we are able to increase the amount offered to recipients! Advocates in Maryland and Virginia are eligible to receive $400 stipends, while advocates in other states in the continental U.S. are eligible to receive $800. Advocates in Alaska, Hawaii and Puerto Rico are eligible to receive $1,000 stipends.

In order to receive a stipend, advocates must attend the Legislative Conference and Lobby Day. Applications are available online through December 18th. All applicants will be notified whether they will receive a stipend or are on the waitlist on January 3rd.

We hosted a webinar earlier this month to provide an overview of the events during Rare Disease Week on Capitol Hill, highlight travel options to Washington, DC and answer questions.  You can find the webinar recording and schedule of events online.

We hope you will plan to join us to educate the new Congress and help shape healthcare policy to better meet the needs of the rare disease community. You can sign up to receive news from Rare Disease Legislative Advocates to ensure that you don’t miss any updates on Rare Disease Week on Capitol Hill. You can also follow us on Twitter and Facebook.

Thank you to

Apply Today for a Travel Stipend for Rare Disease Week on Capitol Hill 2017

Please mark your calendar and plan to join us for Rare Disease Week on Capitol Hill, to be held February 27 through March 2, 2017 in Washington, DC.  The week of events brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. There will be new Members of the House and Senate next year, and it is critical for them to meet members of their communities affected by rare disease.

All events are free for patient advocates, and registration will open in early January.

Applications for Travel Stipends Now Open

The EveryLife Foundation is now accepting applications for travel stipends!  We awarded more than $55k in stipends this year, and hope to enable even more advocates to join us in Washington, DC next year. Patients, caregivers, and others in the rare disease community can apply online. The deadline to apply is December 18th, and all applicants will be notified in early January. Please note that stipends are limited to one per family, and attendance at the Legislative Conference and Lobby Day is required.

Not Able to Attend?

We want every Member of Congress to hear from constituents affected by rare disease, and you can help even if you can’t join us in person. Please share your unique perspective and let your legislators know what issues matter most to you by filling out our online form by February 12th so that we can hand-deliver it on the Lobby Day.  And please share this opportunity with your network to make sure the voice of your rare disease community is heard!

Please sign up for our email list or check the Rare Disease Week on Capitol Hill webpage for more information and updates.

Rare Disease Congressional Caucus Adds Nine Members

Thanks to their diligent work educating Members of Congress, rare disease advocates were successful in expanding the ranks of the Rare Disease Congressional Caucus. In March, nine legislators agreed to join the Rare Disease Congressional Caucus:

Senator James Risch (Idaho)
Senator David Vitter (Louisiana)RDCC-Horizontal-CMYK
Representative Brad Ashford (NE-2)
Representative David Cicilline (RI-1)
Representative John Garamendi (CA-3)
Representative Joe Kennedy, III (MA-4)
Representative Donald Norcross (NJ-1)
Representative David Rouzer (NC-7)
Representative Juan Vargas (CA-51)

We applaud these legislators for taking leadership on the issues that are important to the rare disease community. You can find the complete Rare Disease Congressional Caucus membership at http://rareadvocates.org/rarecaucus/.

View the Presentations and photos from 2015 Legislative Conference

RareDiseaseWeek-Logo-cmyk

Click Here to view presentations and photos from this year’s Rare Disease Legislative Conference:

Read more

Rare Disease Week on Capitol Hill Information Webinar #1

Click below to view the 1st informational webinar:

Rare Disease Week 2015 Informational Webinar #1

Rare Disease Week 2015 Webinar #2