The purpose of advocating in Washington, DC is to spread awareness and lobby for favorable legislation that affects the entire IPPF community. At Rare Disease Week on Capitol Hill 2016, we had 7 advocates from the IPPF community.
Tag Archives: Washington
The First Amendment to the United States Constitution guarantees the right of all citizens to communicate with their elected officials. So you might be asking yourself, “Does my Congressional Representative really care what I think”? Well, the answer is YES!
When the email landed in my inbox last month asking for pemphigus and pemphigoid patients and caregivers to advocate on Capitol Hill, I didn’t hesitate.
I am neither brave nor eloquent with words but the knowledge that I could encourage the passage of bills to find cures or treatments for people all over the world was inspiring. I quickly found my courage and knew my purpose.
On September 26th Todd Kuh and Mariah Lowinske, two patient advocates with Pemphigus Vulgaris, and I attended the American Academy of Dermatology Legislative Conference in Washington DC. As a member of the Coalition of Skin Diseases, the IPPF sends advocates to this conference annually so we can learn about the latest initiatives prior to lobbying Congress for support for treatment and research.
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