NAAF Approved for a $50,000 Engagement Award by the Patient-Centered Outcomes Research Institute

May 12, 2015

We are pleased to announce that NAAF was approved for a Eugene Washington PCORI Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI) to support NAAF’s Annual Patient Support Conference this June!

The Conference brings together patients, partners, physicians, researchers and industry, providing an ideal forum for patient partner engagement, support and community leadership development. Individuals with alopecia areata and their loved ones gather together to share their experiences with one another and to learn directly from leading scientists and medical professionals about the latest research efforts, treatment options, and opportunities for patient engagement.  The Conference is widely referred to as “the treatment until we find a cure".

The primary objectives of the Patient Support Conference are to 1) offer support and help children, individuals and families cope with alopecia areata—particularly the emotional and social struggles that surround it; 2) build bridges of understanding between patients and the researchers and clinicians who design and deliver treatments; 3) engender a meaningful and ongoing dialogue that directs research and treatment efforts increasingly toward end results that are most desired by patients; and 4) empower patient partners to be active participants in the research process and community leaders.

The project is part of a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire healthcare enterprise and to involve them meaningfully in every aspect of PCORI’s work.

 “This project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake,” said Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer. “We look forward to following the project’s progress and working with NAAF to share the results.”

NAAF’s Annual Patient Support Conference and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. PCORI has awarded nearly $8.8 million to support 46 projects to date through this program. 

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

NAAF Patient Stakeholders meet with Biopharmaceutical Company for First Ever Focus Group!
Research Funding Opportunities Announced at Major Dermatologic Conference