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National Scleroderma Advocacy Summit

Sept. 12-14, 2016
Capitol Hill - Washington, D.C

The Scleroderma Foundation’s Advocacy Program provides scleroderma patient advocates from across the nation the opportunity to meet with their Senators and Representatives to educate policy makers about scleroderma and seek co-sponsorship of the “Scleroderma and Fibrosis Research Enhancement Act.”

We are looking for grassroots advocates from critical states and districts to effectively advance legislative and public policy priorities in the 114th Congress.

If you are a person living with scleroderma, and are a good listener and speaker, have an interest in the political process, and are willing to tell your story to lawmakers on Capitol Hill, please submit an application to join us! 

Key States

Alaska, Arizona, Georgia, Illinois, Kansas, Kentucky, Louisiana, Maine, North Carolina, New Hampshire, Ohio, Oklahoma, Pennsylvania, South Carolina, Tennessee, Utah and Wyoming

Capitol Hill Day Activities

  • Participate in face-to-face meetings with members of the Senate and the House and/or their key medical affairs staff.
  • In teams, participants have as many as 15 meetings with Congressional offices throughout the day.
  • Share your story of the impact your condition has had on your life.  Paring people living with scleroderma with members of the Senate and House who sit on key committees is extremely valuable for advancing awareness of scleroderma and advancing our goals for more scleroderma research funding at federal levels.


Capitol Hill Day is a long and physically challenging day, but is extremely rewarding for those who participate.   Sometimes distances between offices are significant, requiring participants to do a great deal of walking. 

  • Monday, September 12:  A Briefing Dinner provides participants with information packs and talking points for each meeting the following day. 
  • Capitol Hill Day – Tuesday, September 13:  The day begins early with teams assembling with their team leader (a member of the Foundation’s advocacy agency, HMCW) to go over the schedule and identify constituent-leaders for meetings on the House of Representatives side of Capitol Hill and on the Senate side.
  • Lunch will be provided at the prestigious Dirksen Senate Buffet.
  • Following lunch, meetings resume through late afternoon, until approximately 4:30 PM
  • At the conclusion of meetings, participants will be transported back to hotel.
  • Wednesday, September 14 – participants depart individually to airport.


If your interest is piqued, please submit an application to join us September 12-14, 2016! Scholarship applications are due August 24, 2016. 

We are looking for grassroots advocates from critical states and districts to advance legislative and public policy priorities in the 114th Congress.

  • All interested persons must submit a complete application (Download a Word or PDF version)
  • A limited number of scholarships are available.  Late and incomplete applications will not be considered.
  • The deadline to apply is Wednesday, August 24, 2016.

Questions or More Information

If you have questions or would like more information, please contact:

David C. Murad
Director of Chapter Relations
Scleroderma Foundation National Office
Phone: 800-722-4673 ext. 252