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State House Event – Pennsylvania
Rare disease advocates joined with the National Organization for Rare Disorders (NORD), the Official U.S. Sponsor of Rare Disease Day, to organize this special event for legislators, legislative staff, the public and the media.
The state house event raised awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. The event provided a space for lawmakers to connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in Pennsylvania.
Literature Fair – Main Rotunda, 10:00 a.m. – 10:30 a.m.
Networking other members of the Rare Disease community and spreading awareness about specific rare diseases.
Press Conference – Main Rotunda, 10:30 a.m. – 11:00 a.m.
Featuring patient advocates Kyle Bryant, Friedreich’s Ataxia; Marie Conley, Cushing’s Disease; Dr. David Fajgenbaum, Castleman Disease; Abby Yingling, Friedreich’s Ataxia; and piano accompaniment by Michael Smedley, CRB1 Retinal Disease. ?Speakers also included Chuck Mohan, Executive Director of UMDF, Tim Boyd Associate Director of State Policy of NORD, Jodie Vento MGC, LCGC Manager, Center for Rare Disease Therapy Children’s Hospital of Pittsburgh of UPMC, members of the newly formed Rare Disease Caucus, and more.
Literature Fair continued – Main Rotunda, 11:00 – 11:30 a.m.
Luncheon – Ryan Office Building Room 205, 11:30 a.m. – 12:30 p.m.
A box luncheon sponsored by Pennsylvania Bio, CSL Behring, Fibrocell, Vencore, Connexion Healthcare, Idera, and Shire.
Cal State East Bay Rare Disease Day Awareness Walk and Scholarship Fundraiser
Sponsored by The Concord Campus, Accessibility Services and Associated Students Inc., and CSUEB sophomore Isabel Bueso, the Cal State East Bay community celebrated Rare Disease Day at both the Concord and Hayward campuses with an awareness walk, volunteer lunch, and ?free t-shirts. The event increased awareness for rare diseases on campus and raised funds for the CSUEB Rare Disease student scholarship. Read more about Isabel and the event here.
Heroic Inner Kids Cosplay Dinner
Heroic Inner Kids is a cosplay nonprofit in the Dallas/Fort Worth which held a dinner and cocktail hour within the cosplay community to raise awareness for Rare Disease Day. The organization was founded by a woman with Sturge Weber Syndrome who believes that costumes and comics can be a wonderful way to inspire people with challenges to overcome their difficulties. In 2015, she hosted the largest photoshoot of cosplayers in the area to advocate and raise awareness. In 2016, she took the next step and celebrated the rare disease community and raised awareness to show why research matters.
The Sanford Burnham Prebys Rare Disease Day Symposium
The 7th annual Sanford Burnham Prebys Rare Disease Day Symposium offered research knowledge, family support, and one-on-one access to leading rare disease researchers for dozens of families impacted worldwide. The event included one-and-a-half days of scientific talks and an interactive half-day session where patients were given the opportunity to meet with speakers and clinicians. Stories in The New Yorker and Der Spiegel in 2015 attested to the symposium’s success. A webcast of the symposium was also available. See more here.
Denver Nuggets Rare Disease Day Game
During a Denver Nuggets game against the Boston Celtics on Rare Disease Day, representatives were present at the Children’s Hospital Booth that evening where they gave out ribbons and shared their stories. Rare Disease facts were displayed on the scoreboard during the game to raise awareness within the audience.
Virtual Event – NORD/ABC Rare Disease Day Tweetchat
NORD co-sponsored a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit. NORD live tweeted with Dr. Besser from @RareDiseases and @RareDayUS (a Twitter feed dedicated to Rare Disease Day in the United States). Marsha Lanes, MS, CGC, NORD’s Genetic Counselor & Medical Educator, provided answers through both Twitter handles.
The tweetchat was an opportunity for patients, experts, the rare disease community and the public to come together, ask questions, get answers, and raise important awareness as part of Rare Disease Day. Read the entire transcript here.