The world marks Rare Disease Day on Feb. 29, 2016 and fibromuscular dysplasia patients will be in Washington, D.C. to increase awareness of the disease and policies impacting the rare community. Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. You can join in as a supporter!
On Monday, advocates and members of the general public are invited to join the National Center for Advancing Translational Sciences and the National Institutes of Health (NIH) Clinical Center, for presentations, posters and exhibits, an art show, and tours. The event is free, and a live webcast will be available for those who can not attend in person.
Tuesday brings Rare Disease Legislative Advocate's conference. Advocates from across the United States join together to review critical legislation and practice effectively communicating with Congressional representatives and their aides. Sarah E. Kucharski, FMD Chat founder and CEO, will play an advocate actress in an on-stage simulation to train fellow advocates how to — and not to — engage with Congressional representatives. In addition, she will serve as a team leader this year, helping guide advocates new to the lobbying process.
“It is an incredibly meaningful experience to work with rare disease advocates who are inspired to tackle complex issues,” Kucharski said. “These issues are about more than disease-specific awareness or cures — they’re about improving healthcare as a whole.”
On Wednesday, advocates will set out upon The Hill for meetings. Due to time constraints and scheduling demands, meetings tend to be brief, and advocates do not learn of their meeting schedule until the day before or even morning of the lobbying day. Advocates represent their geographic locations and are strategically paired to assist one another. Those who are unable to attend in person, are encouraged to learn more about RDLA's state level advocacy programs.
The Rare Disease Caucus Briefing and Rare Artist Reception conclude Rare Disease Week’s legislative activities on The Hill on Thursday.
Follow FMD Chat on Facebook and Twitter for updates from D.C.
Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include stenosis, aneurysm or dissection most commonly in the renal and carotid arteries, migraine-like headaches, dizziness, and tinnitus or a swooshing sound in the ears. Low bone density, joint laxity and degenerative disease in the spine also have been linked to the disease. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.