I am a patient advocate as well as a patient for Sarcoidosis. I was diagnosed in 2011, but was misdiagnosed since 2004. I became an advocate when I found out that Sarcoidosis is on the top of the rare disease list but with the least amount of Government support. I have worked to start by raising awareness of the disease by having all forms of government to make April Sarcoidosis Awareness Month. I have been appointed National Sarcoidosis Ambassador. I have also moved on to work with the Rare Disease community to advocate with other org. to raise awareness and also have set up " A Day For Rare Diseases" an event open to the public to raise awareness for all rare diseases on October15,2016.
Frank is an inspiration to many people who have the rare disease Sarcoidosis. He does fundraisers, has a support group, lobbies in Congress for rare disease support and funding all while battling this awful disease. He attends the today show as well as the view wearing his purple and Sarcoidosis of Long Island gear. He is a leader and an advocate. — Sara
I’m a Patient Leader