Tuesday, November 13, 2012

Rare Disease Legislative Conference


Dear SFA Supporter,

On the last day of February each year, the rare disease community unites to celebrate Rare Disease Awareness Day.  In honor of this day, this community will join forces during the last week of February to draw attention to the special needs of those who are dealing with rare diseases like sarcoma.  While we work tirelessly every day to raise awareness, we see World Rare Disease Day, and the days that lead up to it, as a wonderful opportunity to further educate the public, legislators, and government regulators about the challenges faced by those with sarcoma.

The EveryLife Foundation for Rare Diseases has once again taken the lead in developing two fantastic events during this week and the Sarcoma Foundation of America (SFA) is proud to be a partner with them in this effort.  We would like to invite you to join us in participating in these events to be held in Washington, DC.

Tuesday, February 26, 2013

Rare Disease Legislative Conference: A Rare Disease Legislative Conference will take place on Tuesday, February 26.  This conference aims to educate patient advocates about the legislative process and empower patient advocates to take an active role in the democratic process.

Wednesday, February, 27, 2013

Lobby Day: Patient advocates are invited to take part in meetings on Capitol Hill as a way of educating legislators about the special needs of the rare disease community.  The SFA would love to have members of the sarcoma community on Capitol Hill to share their stories.  Organizers of the event will take care of scheduling the meetings and will provide you with the information that you need to have successful meetings with your Members of Congress and/or their staff.

More information, including a link to the registration site, can be found at http://rareadvocates.org/lobby-day/.  Once you have registered to attend, please let the SFA know of your plans by emailing Lori Hoffman, Manager of Scientific and Government Affairs, atlhoffman@curesarcoma.org.  Additionally, financial assistance for travel costs is available.  Interested parties can apply for travel scholarships at http://rareadvocates.org/travel-scholarship-application/

It takes all of our collective voices to make a difference and raise awareness for rare diseases like sarcoma.  We sincerely hope that you will consider coming to our nation’s capital and join us in this effort.

Tony Ferlenda
Chief Executive Officer

Thursday, November 8, 2012

ACTION ALERT: Tell Congress to Protect the NIH & FDA from Devastating Budget Cuts

The election is over, and the status-quo remains.  Republicans remain in control of the House of Representatives, while Democrats retain control of the Senate and White House.

When Congress returns to work next week for the lame duck session, they must act quickly to protect the National Institutes of Health (NIH) and Food & Drug Administration (FDA) from funding cuts that would paralyze the development of treatments for patients with rare diseases.

Whether you are pleased or disappointed with the outcome of the election, we can all agree that we urgently need Congress to find a bipartisan solution to prevent sequestration.  Please take two minutes today to email your Members of Congress and President Obama to urge them to find a solution that protects rare disease research funding and ensures adequate FDA funding for review and approval of lifesaving treatments.

The potential automatic spending cuts, or sequestration, scheduled to take effect in January 2013, will be devastating for patients as well as the future U.S. leadership of research and development.  Sequestration would slash federal investments in critical health, scientific, medical and biological research aimed at discovering treatments, moving safe and effective new medicines to market, and creating the innovations to grow our economy.

If Congress does not reach an agreement  – which they have been unable to do for a year – automatic, across-the-board cuts of $1 trillion to nearly all government programs will go into effect.  This would mean that the NIH and FDA are each at risk of an 8% budget cut, slowing progress toward developments of new treatments and cures.  We simply cannot allow this to happen.  Have your voice heard!
Please click here to contact your Members of Congress and urge them to protect funding for the Food & Drug Administration & National Institutes of Health! 

For more information on Sequestration visit RareAdvocates.org.