Perspectives on Patient-Industry Engagement Breakout Report
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Report on key points of discussion from Patient-Industry Engagement breakout group.
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Perspectives on Patient-Industry Engagement Breakout Report
- 1. Perspectives on Patient-Industry Engagement Breakout Group Report
- 2. What has already been done and how is it related? • Shared Dialog • LEO Focus Group • Industry Partner Program RoundTables • NAAF Conference where Industry is Present • Research Summits with Patient Participation • Publications from our shared dialog JID Symposium Proceedings Alopecia Areata is a Medical Disease Collaboration on
- 3. What questions still need to be answered? • Willingness to pay vs. Willingness to Risk • Natural history of disease
- 4. What resources are needed? • Unlimited access to capital and human resources • NAAF is a small but mighty staff of 8 • With our industry partners – we got this!
- 5. What can NAAF do to help? • Opportunities for Dialogue • Willingness to pay vs. Willingness to Risk • Information on the continuum of Desires for Treatment and Willingness to Risk • What treatments are best for which people • Collaboration on Publication of what we discover through this dialog • Address psychosocial and emotional impacts - If we achieve acceptance, do we need to treat the hair? • Terminology that doesn’t increase stigma AND acknowledges severity of disease impact on QoL • Communicate back to patient population the value of BioPharma companies bringing resource to dermatology and Alopecia Areata that is • beyond the study of a particular type of treatment – other benefits to field in • chance discoveries that lead to new avenues of inquiry • even if medication is not appropriate to all.