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ADVOCACY PROFILE ++
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Rhode Island
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“Participating in bleeding disorders advocacy at the state level was a
great way to educate my local elected officials about the challenges facing SUMMER 2019 9
the bleeding disorders community. In particular, getting to meet in-person with the
governor was a very special experience, and a valuable opportunity to raise awareness
about key issues such as health insurance and preexisting conditions”
~Danny, Rhode Island

Danny with Rhode Island Governor Gina Raimondo, who issued a proclamation designation
March 2019 as Bleeding Disorder Awareness Month.

New Hampshire

“I started advocating because I thought it would be a good lesson for Seth
but in the end it turns out it was a great lesson for me also. We both learned
that meaningful change begins at the state level. If we don’t tell our representatives
what we need they will never know.”
~Cristelee, New Hampshire

John, Cristelee, and son Seth, pictured with U.S. Senator Jeanne Shaheen.

Virginia

“When the Virginia Hemophilia Foundation chapter had an state advocacy
training day, our family knew it was time to get involved.

It turned out to be an incredible experience. Our newly elected delegate, Debra Rodman,
connected with our issue and we ended up becoming friends through the experience.
She was part of the wave of new freshman delegates who pushed through Medicaid
expansion, and brought health insurance to 400,000 more Virginians.

This last year, we watched the Step Therapy and Accumulator Adjustor protections
happen at our state level. I truly believe that our hemophilia community (along with
other medical advocacy groups) helped spread the awareness of how severely these
policies can affect constituent's financial security. By bringing stories behind the bills,
behind the statistics, we can help our elected officials understand the importance of
legislation.”

~Sarahbeth, Virginia

Sarahbeth’s family poses outside the Virginia state house in Richmond, Virginia.

North Carolina

“I believe advocating is a wonderful thing and everyone should do it. It
helps us connect with people on a personal level and to see that we are
humans wanting the best for everyone.”
~Joseppe, North Carolina

Joseppe’s younger brother, Jean, (left) is who inspires Joseppe at North Carolina’s legislative day.