BOS Advocates Participate in Rare Disease Events

Rare Disease Day was February 28th, offering many events in the United States and across the world.  The National Organization for Rare Diseases (NORD) sponsors Rare Disease Day in the United States, while EURORDIS sponsors the international day.  Members of the BOS community took advantage of many of these including Rare Disease Week on Capitol Hill and state advocacy events.

Over 600 rare disease patients, caregivers, researchers, and other advocates joined together in Washington, DC during Rare Disease Week on Capitol Hill February 27 through March 2, 2017.

Among those were BOS parents, Taylor Gurganus from North Carolina and Jill Morris from Virginia.  They were able to attend the event through stipends offered by EveryLife Foundation and the BOS Foundation.

On February 28, which was Rare Disease Day, both Jill and Taylor attended the Legislative Conference.  This was an informative session where experts from Capitol Hill and patient advocacy organizations lead conversations on what to expect from the new Congress and Trump Administration.  They taught valuable skills to cultivate effective relationships with Members of Congress and staff, along with key legislation impacting the rare disease community. 

The event was livestreamed for the first time and is available on the Legislative Conference resource page.  Organizations such as Global Genes, NORD, Coordination of Rare Diseases at Stanford (CoRDS), and EveryLife Foundation collaborated to make the week a success. 

The following day, Taylor and Jill attended Lobby Day, including a breakfast with remarks by Dr. Janet Woodcock, Director of the Food and Drug Administration's Center for Drug Evaluation and Research, as well as Representative Gus Bilirakis (R-FL) and former Representative Brian Baird (D-WA), who urged advocates to be brief, polite and persistent in their meetings with Members of Congress and staff.

Taylor met with staffers for Senator Richard Burr (R-NC), Senator Thom Tillis (R-NC), Rep. Walter Jones (R-NC), and Rep G.K. Butterfield (D-NC) who is also the co-chair for the Rare Disease Caucus.

Jill met with staffers for Senator Mark Warner (D-VA), Senator Time Kaine (D-VA), Congressman Tom Garrett (R-VA), and Congressman Donald McEachin (D-VA).

They both discussed the wonderful opportunity to learn about the important issues going on in Congress in terms of rare disease.  It was also a chance to learn more about the Affordable Care Act and the changes being proposed from both Democrats and Republicans. 

Jill said, “It was an experience that has prompted me to educate myself more on current legislation and how it will not just impact the children and adults with BOS, but for other people in my community.”

Taylor added, “This experience has opened my eyes to how important it is to advocate, not only medically, but politically as well.

They returned with a list of resources to pass along to the Foundation and anyone else interested in advocacy on a legislative level.  One of those resources was a state scorecard put out by NORD that rates each state on how their laws rate on issues pertinent to the rare disease community.  To see how your state scores, click here.

The NORD state scorecard is under their Rare Action Network (RAN), which is designed to connect individuals and organizations within states and provide the training and resources they need to become effective advocates for policies that support the rare disease community. You can sign up here to learn more.  

Other Rare Disease Day highlights included NORD's first PSA (Public Service Announcement) launching their year-long "Do Your Share" Campaign.  The PSA included Campbell Doty, who was just diagnosed with BOS, along with her mom Michelle. The campaign is designed to spread awareness about Rare Disease through sharing personal experiences of what it is like to live with a rare disease.  Talynn Gurganus and her mom, Taylor, were also featured on the “Do Your Share” website sharing their journey with BOS.  You can also share your story here.

Michelle and Campbell also attended Rare Disease Day in Kentucky at the State Capitol in Frankfort sponsored by NORD’s Rare Action Network (RAN).

The program gave a voice to several rare disease patients, caregivers, and advocates to tell their stories.  Kentucky Lt. Governor Jenean Hampton spoke and issued the proclamation of Rare Disease Day in Kentucky.

Michelle found it both educational and inspirational to see many separate smaller rare disease communities unite as one large group with the common goal of increasing awareness of rare disease and the struggles many face.

“It was nice to see many different groups represented while hearing some of the same issues such as lack of research and treatments.” Michelle said.  Her mother and sister came along to support Campbell and represent the BOS community.

If you would like more information about how you can be involved, please check out the many linked resources listed throughout this article, or contact Taylor at taylor@bos-foundation.org or Michelle at michelle@bos-foundation.org.