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.
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.
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!
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 firstname.lastname@example.org!
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.
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.
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!
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.
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.
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.
Wednesday, March 23rd: 1:00 pm to 2:00 pm EST
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.
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
As you may know, the House passed the Orphan Products Extension Now, Accelerating Cures & Treatments or OPEN ACT in July as part of a broader legislative package called the 21st Century Cures Act. The OPEN ACT has the potential to double the number of treatments available to rare disease patients.
Since passing the House, the bill has stalled in the Senate. Your Senator, the Honorable Bob Casey (D-PA) is a key decision-maker on this vital legislation. Please take a moment to call his office to ask that they support the bipartisan OPEN ACT, co-sponsored by Sens. Hatch (R-UT) and Klobuchar (D-MN). You can find suggested talking points below: Read more