In 2009, US Rare Disease organizations joined the already established European movement of Rare Disease Day, celebrated on the last day of February every year. Since then, a major goal in the US has been to grow the number of State House events across the country. Rare Disease Day 2016 was the most impactful year with 38 states participating. These events are opportunities to meet face-to-face with elected officials and advocate for legislation that directly affects the rare disease community.
California rare disease supporters did not disappoint this year! On February 29, 2016 rare disease advocates, patients, caregivers, and legislators gathered at the California State Capitol to celebrate the passing of Senate Concurrent Resolution No. 108. This measure proclaimed the last day in February as Rare Disease Day in California for 2016 and all subsequent years to follow.
Assemblyman Katcho Achadjian (CA District 25 & Principal Co-Author or SCR 108) announced the resolution on the assembly floor. Rare Disease Day guests then proceeded to the Eureka Room of the Capitol building where representatives from multiple rare disease organizations spoke, including Kristen Angell from the National Organization for Rare Disorders (NORD) and the IPPF’s own Executive Director, Will Zrnchik.
The passage of SCR 108 was a huge step forward for the rare disease community in California. Every year, we hope to continue to raise more awareness and advocate for more issues that affect our rare disease communities.
OKC Thunder, Sacramento Kings, and Rare Diseases
To cap off an already successful day in Sacramento, NORD and the IPPF educated more than 15,000 people on rare diseases and P/P at the Sacramento Kings/Oklahoma City Thunder NBA game at Sleep Train Arena. Just before tip-off, Will Zrnchik was interviewed about Rare Disease Day and P/P. This interview was broadcast live to the entire stadium via the jumbotron hanging high above the court.
Immediately following the interview, a special Rare Disease Day and P/P informational video created by the IPPF’s Patrick Dunn was played. The same video was played again at half-time.
Though the Kings’ lost, the game was exciting. Enthusiasm was especially high in Section 123, which was filled with rare disease patients, family, and friends celebrating the communal effort to raise awareness for all rare diseases.
Throughout the game, NORD and IPPF staff passed out information and the always-popular #healourskin sunglasses, which provided another opportunity to educate fans about P/P.
WASHINGTON, DC Update
The purpose of advocating in Washington, DC is to spread awareness and lobby for favorable legislation that affects the entire IPPF community. At Rare Disease Week on Capitol Hill 2016, we had 7 members of the IPPF community advocating for:
HR 971/S1421 (OPENACT): legislation that will repurpose “off label” drugs for rare disease indications that are not currently covered by the FDA
HR 605/S275 (Medicare Home Infusion Act): legislation that will make it easier for Medicare patients to get infusions done in their homes
HR 1600 (Patients Access to Treatment Act): legislation that would cap the amount that insurance carriers can charge patients for more expensive medications
S 2030 (Advancing Targeted Therapies Act): legislation that would allow information learned in clinical trials to be used in the development of new therapies
All Congressional Members to join the Rare Disease Caucus