February 25, 2013
In the United States, a disease or disorder is considered rare if it affects fewer than 200,000 people; in Europe, the threshold is drastically lower, at 2,000. SCAD is considered one of the approximately 7,000 rare conditions in the world, because we truly don’t know how many individuals are affected by it. One estimate is that 1,000 new diagnoses of SCAD are made each year. But we just don’t know for sure.
To help further the understanding of SCAD – and the initiatives of all rare conditions – SCAD Research participated in two events in Washington, D.C., last month: Rare Disease Legislative Advocates (RDLA) Lobby Day and Rare Disease Day at the National Institutes of Health (NIH).
On February 26-27, 2013, SCAD Research joined 200 rare disease advocates on Capitol Hill. The highlight was meeting with Congressional representatives to explain our condition and encourage continued funding during this tight fiscal period. The objectives of RDLA lobby days were to:
- Understand the legislative and appropriations process
- Inform Congress about rare diseases and the many different needs of the patient community
- Build lasting relationships with Members of Congress and their staff
- Ensure that the needs of rare disease patients are considered in future legislation and policy
- Empower patient advocates to take an active role in the democratic process
On February 28 and March 1, 2013, NIH hosted its sixth annual rare disease events by celebrating and recognizing the research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; and the Genetic Alliance.
SCAD Research put on a video display of survivor stories in the exhibit hall, a poster illustrating the anatomy of dissection, and distributed educational materials to attendees.