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Washington, DC Metro Area Alopecia Areata HARA Presentation & Support Group Meeting

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Wednesday, June 13, 2018 - 7:00pm (ended)
Contact:
Miranda Guerriero
Phone: 
410-861-7797
Location: 
Rockville Memorial Library
21 Maryland Avenue
Rockville, MD 20850
United States

Wednesday, June 13, 2018

7:00pm

Location: 

Rockville Memorial Library
21 Maryland Avenue

Rockville, MD 20850 

Speaker: Miranda Guerriero

Health and Research Ambassador

National Alopecia Areata Foundation (NAAF)

 

Research for alopecia areata is quickly advancing now more than ever before. Therefore, it is especially

important to get involved with research so the endpoints that are measured and the outcomes that are

studied are valuable you. For years, researchers have studied outcomes that they perceived to be of value

to those with a disease, but with the creation of the federally funded Patient Centered Outcomes Research

Institute (PCORI), there is more of an emphasis on those with the disease giving input to researchers

regarding what is important to them. Please check out the PCORI website for more information on this

organization (http://www.pcori.org/about-us/why-pcori-was-created). In 2015, as part of our effort to build bridges of understanding between patients and the researchers and clinicians who design and deliver treatments, NAAF launched the Health and Research Ambassadors pilot project. This was led by Angela Rodgers, a medical student who is also a NAAF Sacramento Support Group Leader and a Legislative Liaison.

The HARA program teaches those with alopecia areata about how to get involved with research to ensure that your voice is heard and also ensure that what is meaningful to you—the patient—is what is being researched.

Come learn more about this exciting opportunity!

Support meeting will follow HARA presentation