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NAAF Represents AA with the AADA, CSD and PhRMA in DC

Sep 26, 2016

Just two months after our triumphant Day on Capitol Hill during the NAAF Conference, we were back in Washington, DC, representing the alopecia areata community at the 2016 American Academy of Dermatology Association (AADA) Legislative Conference.

NAAF Communications Director Gary Sherwood, who also oversees our advocacy efforts, was joined by one of our original and most active Legislative Liaisons, Deirdre Nero, who also became a NAAF Board Member this year. Gary and Deirdre joined with dermatologists from the AADA to meet with lawmakers and express the needs for insurance parity (which includes co-sponsoring H.R. 4989, The Cranial Prosthetic Medicaid Coverage Enhancement Act), treatment access, and greater funding for the National Institutes of Health. Gary and Deirdre made a special point to thank Representative Ileana Ros-Lehtinen (R-FL) for being the lead on H.R. 4989 as we continue to bring aboard co-sponsors. 

“It was an honor and privilege to act as NAAF’s patient advocate,” says Deirdre. “The dermatologists, legislators, and other patient advocates all were able to benefit from seeing a patient with alopecia areata there and hearing firsthand about how the disease impacts our lives and the lives of our families.” Deidre was also excited to meet George Clooney in the hotel elevator — but that’s another story!

Additionally, Gary and Deirdre met with colleagues and patient representatives from a host of other organizations at the Coalition of Skin Disease (CSD) meeting, in which a number of issues important to our communities were discussed, including best fundraising practices and legislative meeting strategies.  

Lastly, Gary and Deirdre attended the 2016 Research & Hope Awards, presented by the Pharmaceutical Research and Manufacturers of America (PhRMA) to recognize achievements in research and advocacy.  NAAF was honored to be a co-host of this event where honorees included Virginia Ladd, president and executive director of the American Autoimmune Related Diseases Association, which, to quote her award presentation, is an organization she founded “to bring a national focus on autoimmunity and increase collaboration in autoimmune research, education, awareness and advocacy.”    

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