NAAF Patient Stakeholders meet with Biopharmaceutical Company for First Ever Focus Group!
On March 22, 2015 a group of seventeen NAAF patient-stakeholders, NAAF staffers Laura Ralph and Maureen Smith, and ten representatives from a biopharmaceutical company convened in New York City, at the request of the biopharma for a focus group to learn more about what patients would want-and not want – in a treatment or cure.
The five-hour focus group was filled with personal stories of struggle and triumph, helpful insights about what it means to live with alopecia areata, and important things to consider when developing a treatment such as its safety, efficacy, and durability. All participants came away with new understandings, new friendships and hope.
Patient stakeholders are the real experts and their voice is essential when considering drug development. NAAF could not have been more encouraged by the fact that the participants from the biopharma absolutely grasped that concept.
The meeting was another turning point for the NAAF community and an affirmation of our work to create an ongoing dialogue to build bridges of understanding between patients with alopecia areata, researchers who study the disease, and the biopharmaceutical companies and clinicians who design and deliver treatments.
We hope that this focus group was the first of many and we will continue our work to build a strong patient-centered research community and direct treatment efforts toward the most desired end results.