As an advocate for patients with rare diseases you are a very important part of the legislative process. You can make the difference as you are the voices your legislators and congressmen want, or in some cases do not want to hear. Please complete the form below to take action and contact your Member of Congress

After you take action your job is not done! The final step is to share the action alert with your family, friends, co-workers and any other people that might be interested in taking action on behalf of the rare disease community.

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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.

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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!

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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!

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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!

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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!

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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!

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Sign On and Ask Congress to Advance Medical Innovations Legislation

On behalf of of the Bipartisan Policy Center Advocacy Network, we are sharing this open letter to Congress from former Senate Majority Leader Bill Frist, M.D., former Congressman Bart Gordon, as well as patient, health care provider, research and biomedical industry organizations. The Senate Health, Education, Labor, and Pensions Committee passed a series of initiatives earlier this month as its companion to the 21st Century Cures Act.

Click this link to read the letter and find out how you can sign on to support.

Thank you for your support and for keeping up the fight on behalf of the rare disease community. Please remember to share this alert with your networks and on social media.

Video: March 3rd Rare Disease Caucus Briefing on The Rare Disease Ecosystem

Earlier this month, the Rare Disease Congressional Caucus hosted a briefing on The Rare Disease Ecosystem: Fostering Patient Engagement & Driving Biomedical Innovation. This briefing was featured as part of the 2016 Rare Disease Week on Capitol Hill. In addition to speeches by caucus co-chairs Senators Orrin Hatch and Amy Klobuchar, Representatives Leonard Lance and Joe Crowley, Representative Gus Bilirakis made a surprise appearance.

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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.

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From EveryLife Foundation: Take Action to Support Lifesaving Newborn Screening Legislation in California

The EveryLife Foundation is working to expand the lifesaving potential of newborn screening in California. Last month, SB 1095 was introduced by pediatrician and California State Senator Dr. Richard Pan. This bill would help eliminate the legislative delay in newborn screening and ultimately ensure that patients are treated as early as possible. Early screening plays a vital role in ensuring that rare diseases are detected and can be better treated. Read more