A group from the HPS Network attended Meet the Experts, a patient program held at the American Thoracic Society’s annual meeting by the Public Advisory Roundtable in May. This year’s theme was “The Role of Patients in Advancing Treatments and Cures.” Sessions covered various aspects of participating in research, from what questions to ask to what it means to participate in a patient registry.

 

After lunch, the audience broke into different groups to discuss their particular disease state. The HPS community spent our time discussing updates in advocacy for continued research and the obstacles we must overcome as a community.

 

“It was great to have such a turn out from the HPS community at this event,” says Heather Kirkwood, Vice President of the HPS Network, “We all wore our Dare to be Rare shirts so we were very noticeable to the doctors and other patients that attended.”

 

Those from the HPS community who attended the event were: Donna Appell, Ashley Appell, Heather Kirkwood, Carmen Camacho, Frankie Feliciano, Nancy Lee, Julie Rehman, Karen Tillman, Tommy Tillman, Candice Sipe, Candice Sipe and Eden Brock.

 

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