Just over five months ago, we sent our staff home due to the emerging threat of the coronavirus.
Since that time, we adapted to our new socially distanced reality and refocused our priorities through the lens of a pandemic that threatened an already vulnerable rare disease population.
- Patient organizations and industry leaders mobilized a COVID-19 Response Working Group through our Community Congress program, urging leaders to take action to ensure patients have access to in-home services, telehealth flexibilities, clinical trial and newborn screening, and to guard against discrimination during medical rationing. Recently, Community Congress Access Working Group members have taken the lead on ensuring that our rare disease community is prioritized in discussions about COVID-19 vaccine distribution.
- The community utilized our COVID-19 Action Center to stay current on news and resources. Nearly 200 patients applied to receive support from our new #RAREis Scholarship Fund.
- Through our Rare Across America program, more than 500 advocates met with their Members of Congress via Zoom and conference calls. These advocates received personalized coaching through our Fast Forward for Rare partnership with SmithSolve and training webinars on how to advocate virtually. We empowered advocates to ask their Members to support issues emerging from the crisis, such as making home and telehealth flexibilities permanent.
- Our Rare on the Road tour with Global Genes brought nearly 500 patients, parents and caregivers together online to learn how to tell their story and to get to know fellow community members in their local area.
- Young adult advocates brushed up their skills with peer-led webinars through the Young Adult Advocates of RDLA (YARR) Summer Series.
- Advocates with creative abilities told their stories through art and entered their pieces into the Rare Artist Contest via Facebook.
- Rare Giving event sponsorships have increased to support virtual and in-person events and conferences in 2021 that educate participants about the importance of public policy and advocacy. Be sure to request sponsorship for your event before the application deadline October 30, 2020.
- While we deeply miss seeing our community in-person, we have planned our activities for the remainder of the calendar year to be accessible via virtual formats.
- We will co-host Newborn Screening Bootcamp online with Expecting Health at Genetic Alliance. We will gather thought leaders virtually for our Rare Disease Scientific Workshop which will address COVID-19 mitigation strategies in rare disease therapy delivery and development. And, as always, we will celebrate the community during our Annual RareVoice Awards which will come straight to your living room via livestream.
While in-person advocacy may be impeded currently, we must keep making our voices heard -utilizing whatever technology necessary – until policies are changed and lives are saved.
We hope that you are staying safe during this extremely challenging time and that you continue to stay informed, stay connected and stay engaged.
