RDLA has a plethora of tools you can use to amplify your voice and make sure it is heard in Government.

– Follow and track the bills affecting the Rare Disease Community, including the bills rare disease advocates lobbied for during Rare Disease Week 2014: http://www.congressweb.com/kaki/bills

– Find, write, and call your elected officials to tell them what you want their priorities to be: http://www.congressweb.com/kaki/legislators

– Use this link to find media contacts in your area and send an op ed to your local paper: http://www.congressweb.com/kaki/media

– Find information on the elections in your area: http://www.congressweb.com/kaki/voterinformation

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.

Kids v Cancer Creates Pediatric Cancer Legislative Yearbook for 2016

Kids v Cancer compiled a yearbook summarizing the achievements of pediatric cancer advocacy organizations in 2016 and outlining steps that pediatric cancer organizations plan to take in 2017. The Pediatric Cancer Legislative Yearbook 2016 is available here.

 

 

 

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.

NORD to Host Free Webinar on State Policy Report Card on January 24th

On January 24th at 3pm EST, the National Organization for Rare Disorders (NORD) will host a webinar on the 2016 State Report Card. Tim Boyd, Associate Director of State Policy at NORD, will discuss the report card and discuss what this means for 2017 advocacy initiatives across the country. There will be an opportunity to ask questions. You can register for the free webinar here.

The second annual edition of the NORD State Report Card rates states on the strength of policies that help people with rare diseases, including coverage of medical foods, newborn screening, and prescription drug cost-sharing limits. You can download the report here.

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.

How to Take Political Action in the Rare Disease Community

Many people in the rare disease community feel compelled to take action but do not really know where to start.

As a rare disease advocate, you are critical to the legislative process. Your voice needs to be heard by policymakers, many of whom rely on advocates to set legislative priorities. In D.C. and in state capitols, the old adage “strength lies in numbers” rings true. We must utilize our passion and tenacity to take part in “Action Alerts”.

Read more

Update: Funding for Secured for Gabriella Miller Kids First Research Act for Pediatric Cancer

In April, President Obama signed the Gabriella Miller Kids First Research Act authorizing Congress to allocate additional funding for pediatric cancer research through the National Institutes of Health (NIH). Congress, however, has not taken the steps needed to unlock the funding for NIH.

Today, December 10, 2014, Funding for the bill was included in the funding package to be passed by Congress.

Congratulations! This is a great example of what we can accomplish working together as a broad coalition.

If you took action by signing-on to our letter reminding congressional leadership to prioritize funding for rare diseases like childhood cancers THANK YOU!!!

 

In-District Lobby Days: Resources

The following resources will help you be prepare for a meeting with your elected representatives.

Click on the title to view the webinars.

One-Sheets:

 

How to Attend a Congressional Town Hall

Taking part in a public or town hall meeting is a great way to build a relationship with your Member of Congress and his or her staff and to raise the profile of the rare disease community to policy-makers.  Such events generally take place in your community or district throughout the year and provide an opportunity for Members of Congress to hear from constituents on a wide range of concerns.

Read more

Ask Your Candidates! where they stand on medical progress

Research!America’s Ask Your Candidates! program is the only voter education initiative focused on our nation’s commitment to medical and other health-related research. The AYC! project will run through the elections on Tuesday, November 4, 2014. With the help of Research!America, voters can ask candidates for their stances on any number of issues relating to medical research.

Learn more at www.askyourcandidates.org!

Read more