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.

Video from Rare Disease Congressional Caucus Briefing on Strengthening Medical Innovation Now Available

On September 14, 2016, the Rare Disease Congressional Caucus gathered a contingent of thought-leaders in the rare disease space to discuss Strengthening Medical Innovation in America for Rare Disease Patients.

Energy and Commerce Committee Chairman’s Open Letter to Advocates on #CuresNow

Rare disease advocates across the country, including Emily Muller and Sharon Rose Nissley of Illinois as well as Shira Strongin of California, are helping to generate support for 21st Century Cures. And their efforts, as well as those of advocates meeting with Members of Congress and their staff in In-District Lobby Days meetings, are making a difference!

As U.S. House of Representatives Energy and Commerce Committee Chairman Fred Upton wrote in a recent editorial:

“Thanks to a remarkable outpouring and mobilization of rare disease advocates, August 2016 will go down in the books as the “Summer of Cures”… Together, we’ve made incredible strides in our effort to deliver #CuresNow. Every story, every single voice matters, and we are grateful for your support and willingness to share your personal experiences with disease.”

But time is running out for the Senate to act. As Chairman Upton noted, “It’s been a tremendous effort by the rare disease community and I am proud to report that we are closing in on the finish line. But we can’t get there without everyone’s continued efforts — now is the time to double down on all our efforts.

This month, the EveryLife Foundation for Rare Diseases is asking patients and advocates to submit photos and hashtag them with #CuresNOW. Lives are depending on it.

Take Part in the Rally for Medical Research!

Held every September, this Capitol Hill Day event continues the momentum established in 2013, and includes nearly 300 national organizations coming together in support of the Rally for Medical Research. Led by the American Association for Cancer Research, the purpose of the Rally is to call on our nation’s policymakers to make funding for National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED.

Click here to get learn more and get registered today!

Ask Congress to Fund More Childhood Cancer Research

When Congress returns from their August recess, they will be considering how much funding to provide the National Institutes of Health — and the National Cancer Institute for 2017. As reported on the Children’s Cause Cancer Advocacy blog, a House Appropriations committee recently approved a spending bill that would increase NIH funding by $1.25 billion, while Senate appropriators would increase the NIH budget by $2 billion.

Children’s Cause Cancer Advocacy is urging advocates to write to their Senators and Representatives and ask them to support the higher Senate number, so that the NIH and NCI continue to work for new treatments and explore the promise of immunotherapy.

Take action now and tell Congress why each additional research dollar matters for children with cancer.

Then, consider scheduling a district office meeting during this August recess. Face-to-face meetings with your elected officials and their staff in the district office are an extremely effective way to get to know them and express your views on key issues like this one. CCCA’s new step-by-step Guide to Congressional District Meetings can help you!

Join the coalition in support of a National Emergency Treatment Database

The Cambria Lord Foundation invites rare disease non-profits nationwide to join in their efforts to establish a National Emergency Treatment Database for rare disease patients. If your organization is interested in joining the coalition, visit their website here, or email wear4rare365@cambrialordfoundation.org!

Help Pass the Lymphedema Treatment Act!

The National Lymphedema Network is asking for help to pass the Lymphedema Treatment Act, S. 2373/H.R. 1608. This legislation seeks to improve coverage for lymphedema treatment by amending Medicare to cover compression supplies. Also supporting are the American Cancer Society, American Academy of Physical Medicine and Rehabilitation, Oncology Nursing Society, American Physical Therapy Association, and American Occupational Therapy Association.

CLICK HERE to sign on to support!

Sign Your Organization On to Support Increased NIH Funding and Senate Innovations Legislation

Research!America is asking YOUR organization to sign on to a letter thanking the Senate HELP Committee Chairman Lamar Alexander and Ranking Member Patty Murray for their efforts to advance the Senate Innovations legislative package. These efforts have included negotiating requested additions and changes, securing pay-fors to accommodate an NIH funding boost, and facilitating Senate consideration of the bill under a timetable.

CLICK HERE to sign your organization on to this letter.

The deadline is 10:00 am on April 26th, so please share this link on social media and help get the word out. Thank you for keeping up the fight on behalf of the rare disease community!

RDLA’s March Legislative Webinar & Conference Call

 Wednesday, March 23rd: 1:00 pm to 2:00 pm EST 

Click here to REGISTER

These meetings help facilitate open dialog about legislation that affects the rare disease community. They are open to the public and the media. We ask that media formally announce their participation and refrain from quoting any of the discussion during the meeting. We encourage media to follow up with participants after the meeting for direct quotes.

Read more

EveryLife Foundation for Rare Diseases Announces Formation of Bicameral Rare Disease Congressional Caucus

12-16-15 – Washington, D.C. – In a show of bipartisan support for the rare disease community, members of the House and Senate have come together to form the first bicameral Rare Disease Congressional Caucus.

The Caucus will be critical in raising awareness of the challenges faced by rare disease patients and serve as a platform for giving those individuals a voice in both the House and Senate. In addition, the Caucus will convene briefings throughout the year to educate Congressional staff on topics of importance to the rare disease community.

The Caucus will be co-chaired by Representatives Lance (R-NJ) and Crowley (D-NY)  and Senators Hatch (R-UT) and Klobuchar (D-MN).

“Throughout my time in the Senate, I have worked hard to help the 30 million Americans with rare diseases,” Sen. Hatch said. “While we have previously taken important steps, like passing the Orphan Drug Act, the fact that 95 percent of rare diseases currently have no treatment shows that much more needs to be done. Senator Klobuchar has been a terrific partner on legislation to get vital treatments to patients in need, and I am honored to join her as Senate Co-Chairs of the Rare Disease Congressional Caucus.”

“While there are about 7,000 known rare diseases, there are fewer than 500 drugs approved to treat any of those conditions,” Sen. Klobuchar said. “It is critical that we work together to increase the number of safe, effective, and affordable treatments that are available for people with rare diseases. I have long worked with Senator Hatch on this issue and I look forward to continuing this work as a Senate Co-Chair of the Rare Disease Congressional Caucus.”

The Rare Disease Congressional Caucus, originally formed in 2009 by Rep. Upton (R-MI), is currently comprised of 88 Members of the House and will be expanded to include the Senate.

“We are grateful to our House champions and to Senators Hatch and Klobuchar for stepping-up to lead this Caucus on behalf of the rare disease community. We are looking forward to raising awareness about the importance of public policy to spur the development of new therapies for rare disease patients,” said Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases.

Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, will continue to coordinate regular Hill briefings and act as a legislative clearinghouse for the patient community, with the goal of mobilizing patients to be effective legislative advocates (www.rareadvocates.org).