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

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