In last week’s #RarePOV tweetchat, leading rare disease advocacy organizations and individual patient advocates came together to share resources and plans for the upcoming international Rare Disease Day. More than 100 individuals and organizations participated, generating more than 680 tweets in the hour-long conversation and building on the momentum from the first #RarePOV tweetchat.
While individual rare diseases have a relatively small patient population (fewer than 200,000 patients in the U.S.), taken together they affect 1 in 10 Americans. The challenge is to raise awareness of both individual rare diseases and the collective impact of rare disease on patients in the U.S. and worldwide. International Rare Disease Day is a chance for the global rare disease community to come together to do both – and is a once-a-year opportunity that we must fully leverage with our combined reach and resources. As @ RareDiseaseDay said, “#RareDisease Day means breaking isolation through a vast, united international network of solidarity”.
Taking Action on Rare Disease Day
Anyone can participate in Rare Disease Day – and the more of us who do, the bigger an impact we can have. Ideas shared in the tweetchat that anyone can do from home include changing your Facebook profile (@GlobalGenes can help) and participating in Handprints Across America. There are events planned in 17 State Capitols as well as several rare disease symposiums across the country. You can see a state-by-state list on the Rare Disease Day USA website sponsored by the National Organization for Rare Disorders (NORD).
If you’ll be in DC for Rare Disease Day, you will be in very good company! You can join the Rare Disease Legislative Advocates for a reception and screening of Life According to Sam and/or participate in their legislative conference and lobby day. The National Institutes of Health will host posters and exhibits as well as a series of talks by representatives of patient advocacy organizations, PhRMA, U.S. Food and Drug Administration, and others.
Events are not limited to the U.S., as evidenced by participation in the tweetchat by several people from Europe. You can find information on events in other countries on the global Rare Disease Day website.
Much More to be Done
Participants highlighted the need to educate members of Congress and to get more attention for rare diseases on social media as well as traditional media. @Taylorstale shared a recent article in Runner’s World that highlighted Batten’s disease and suggested patient advocates contact local media to discuss progress in medical research. @SCADAlliance suggested that advocates “practice elevator story & collaborative #raredisease message” for when we have just a few moments to raise awareness. @RareDiseases shared a press kit with sample press releases and letters to the editor.
When I asked what makes rare disease advocacy efforts successful, @CurityMD captured the sentiment of the chat by stating it is “passion, dedication & an incredible network of friends and family; community is key.”
There was agreement in the chat about the ability of one individual to make a difference. @RxProcess reassured another participant that “it can be daunting, but think of the collective impact if each person does ONE thing.” @scweiss2001 defined success as “just 1 rare disease patient realizes they are not alone & help is available”.
If you missed the #RarePOV tweetchat, I encourage you to read the Storify highlights and join the weekly #RarePOV discussion. Alone we are rare, together we are strong!
Stephanie Fischer Stephanie is former Senior Director of Communications at PhRMA, focusing on science advocacy and regulatory issues. As a rare disease patient and stroke survivor, she is very passionate about the need for public policy that encourages innovation and the development of safe and effective new therapies.
Topics: Rare Diseases