A message I received from the Sarcoma Foundation of America:
Dear SFA Member,
Every year the rare disease community unites to raise awareness of rare diseases. On February 29, 2012, the community will join forces to celebrate World Rare Disease Day. This is an opportunity to draw attention to the special needs of those who are dealing with rare diseases like sarcoma.
The Sarcoma Foundation of America (SFA) is pleased to be participating in this day. While we work tirelessly every day to raise awareness, we see World Rare Disease Day as a wonderful opportunity to further educate the public, legislators, and government regulators about the challenges that those with sarcoma face.
A significant part of the SFA’s mission is to advocate for increased sarcoma research and for a more streamlined, flexible drug approval process. Legislation has recently been introduced in the United States House of Representatives that would help the Food and Drug Administration (FDA) better exercise flexibility in approving drugs for rare diseases like sarcoma. The SFA has endorsed this bill (HR 3737 - Unlocking Lifesaving Treatments for Rare-diseases [ULTRA] Act) and is advocating for its passage.
One event leading up to World Rare Disease Day is a Congressional Lobby Day in Washington, DC. This event, to be held on Tuesday, February 28, 2012, is being sponsored by our friends at the EveryLife Foundation for Rare Diseases. There will be an advocacy training session that morning, followed by meetings on Capitol Hill in the afternoon. The goal is to educate Members of Congress about rare diseases and to encourage passage of the ULTRA Act.
We would love to have members of the sarcoma community on Capitol Hill to share their stories! We’d like to gauge your interest to see if you would be open to coming to Washington, DC, to be a part of this exciting and important event. Or, if you cannot make the trip to Washington, DC, you could help us achieve our goals of reform by calling your Member of Congress on that day. If you are interested in learning more about Lobby Day, or are interested in participating in person or by phone, please reply to this e-mail (info@curesarcoma.org). It will take all of our collective voices to make a difference and see legislation passed that would aid in the development of drugs for rare diseases like sarcoma. We hope that you will consider joining us in this effort!
Sincerely,
Mark Thornton, MD, PhD
President