Town Hall Launch Gives Platform for Patient Advocacy – Will You Inbox Your Reps?

April 4, 2017

Facebook announced a new feature this week that allows users to search their address to find local representatives as a means to easily access multiple ways of contacting them. This feature is great news for the rare disease community, but they are not the first to think of such a system. If you’ve ever used Rare Disease Legislative Advocate’s website you’d see that this isn’t really a new concept, as the organization, which works on behalf of patients in legislative issues, has had a similar directory up on their website for some time now.


“We support efforts to help rare disease patients, caregivers and others in the community engage with elected officials,” says Stephanie Fischer, Senior Director of Patient Engagement and Communications at the EveryLife Foundation for Rare Disease. “Public policy at all levels of government can have a significant impact on the rare disease community which is why we are committed to educating and empowering people to be advocates through events such as Rare Disease Week on Capitol Hill and RARE on the Road, as well as the many free resources available on our  Rare Disease Legislative Advocates website.”


And in the true spirit of advocacy, Fischer and EveryLife have encouraged patients to reach out to their representatives in any way that engages them to do so. With the amount of community support through Facebook, rare disease patients will undoubtedly be turning to this feature to make their voices heard on important issues.
Tell us, how you will be using Facebook’s newest feature to change the way the world sees rare disease?

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