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Health & Research Ambassadors Program

The Health and Research Ambassadors (HARA) Program seeks to engage, inspire, and equip a new cadre of patient volunteers to collect and share insights into research outcomes that are meaningful to patients and their families. This program is modeled on the NAAF Legislative Liaisons program, but here we are recruiting people who have personal experience living with alopecia areata and also have educational and/or professional ties to the fields of research, medicine, or psychology (such as graduate students in these fields) or a strong interest in these areas of study.

In January 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. Angela developed and implemented a training program for dermatologists focusing on the mental health component of alopecia areata. Angela’s presentations to dermatologists at medical institutions throughout Northern California were very well received, and even comprised part of the core curricula at one medical school. For more information, see the HARA Presentation and NAAF Statement to Medical Providers

As advancements in research rapidly progress, we seek to build an even stronger patient-centered research community to prioritize our research agenda and to direct research and ultimately treatments toward the most patient-centered outcomes and desired end results. Now more than ever, we are working to increase community involvement in meaningful and ongoing dialogue in an effort to build bridges of understanding between patients with alopecia areata, researchers who study the disease, and clinicians who design and deliver treatments. We want to increase the number of successful ongoing research studies for the benefit of patients with alopecia areata. And for that we need patient involvement.

The HARA Program is an innovative approach to engage both patient partners and the research community. The HARA ambassadors’ personal experience with alopecia areata, and their growing knowledge of the health and research field make them ideal ambassadors and liaisons to gather information from patients and become an important and trusted voice within the research community, enabling them to push for the most meaningful outcomes and the treatment or cure with the most desired results.

Over the coming months, NAAF will be working on the following steps to further develop the HARA program:

  • Initiate a HARA training program (modeled after NAAF’s Legislative Liaisons training program).
  • Continue to recruit HARA participants.
  • Work with HARA participants to develop a list of gaps in alopecia areata treatment and research.
  • Seek funding to support the HARA program.

We would also like to hear your ideas for implementing something in your region. Are there specific activities you would like to begin as part of the HARA program? Please let us know! For more information on the HARA program, please contact Maureen Smith, maureen@naaf.org.