Tell the FDA What It's Like to Live with Alopecia Areata!
Public Meeting for Patient-Focused Drug Development on Alopecia Areata
The Food & Drug Administration is holding a public meeting to hear directly from you about what it's like to live with alopecia areata. This is a rare opportunity to talk about how the disease symptoms and current management options impact our community.
6:00 PM | Sunday, September 10 | NAAF Dinner Reception at the Hyatt Regency Bethesda sponsored by LEO Pharma
9:00 AM | Monday, September 11 | NAAF Breakfast for PFDD attendees at the Hyatt Regency Bethesda sponsored by Concert Pharmaceuticals and Aclaris Therapeutics
1:00 PM | Monday, September 11 | Patient-Focused Drug Development meeting at the FDA White Oak Campus
NAAF will arrange for shuttles between the Hyatt Regency Bethesda and the FDA meeting. If you plan to attend the dinner, breakfast and/or take the shuttle from the hotel, please Register here by Monday, August 28.
The National Alopecia Areata Foundation acknowledges Leo Pharma, Concert Pharmaceuticals and Aclaris Therapeutics for their support. The Foundation is solely responsible for all government relations and advocacy activities, content and development.
Hotel + Accommodations
Hyatt Regency Bethesda
One Bethesda Metro Center
Bethesda, MD 20814
Hotel Direct Line: 301-657-1234
Central Reservations: 800-233-1234
Hotel Reservation Deadline for the NAAF rate is now Monday, August 14
PFDD Meeting participants are responsible for their own travel arrangements. We recommend you make your hotel reservations as soon as possible. NAAF has reserved a block of hotel rooms for PFDD participants at the Hyatt Regency Bethesda for $149.00 USD per night. To make your reservation, call 301-657-1234 or 800-233-1234 and request the National Alopecia Areata Foundation group rate. Monday, August 14 is the last day rooms will be available at the NAAF rate. NAAF will arrange for shuttles between the hotel and the FDA meeting.
How the Meeting Works
For each topic, the FDA will select a panel of patients and/or patient representatives (such as a parent or caregiver) who will present comments to begin the dialogue. This will be followed by a facilitated discussion inviting comments from all patients and patient representatives in the audience.
Patients and patient representatives who are interested in serving as a panelist, must:
1) Register here to attend the meeting in-person and indicate that you wish to serve on one of the two panels; and
Panelists will be confirmed prior to the meeting, and registration for the meeting will be open until Monday, August 28. If you are unable to attend the meeting in person, you can register to participate virtually by Sunday, September 10.
NAAF is equipped to provide a limited amount of financial aid to help individuals in need attend the meeting. To learn more about how to apply, please contact Maureen Smith at firstname.lastname@example.org.
Topic 1: Health effects and daily impacts that matter most to patients
1) Of all the symptoms or disease manifestations that you experience because of your condition, which 1-3 symptoms or manifestations have the most significant impact on your life? (Examples may include location or type of hair loss [i.e. loss of hair on scalp, loss of eyebrows, loss of all hair on body patchy hair loss], nail changes, hair quality upon regrowth)
2) Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include daily hygiene, engagement in personal relationships, participation in sports or social activities, completion of school or work activities, etc.)
3) How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?
4) How has your condition changed over time? Would you define your condition today as being well-managed?
5) What worries you most about your condition?
Topic 2: Patients’ perspectives on current approaches to treatment
1) What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and non-drug therapies such as diet modification) How has your treatment regimen changed over time, and why?
2) How well does your current treatment regimen control your condition? How well have these treatments worked for you as your condition has changed over time?
3) What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include going to the clinic for treatment, time devoted to treatment, side effects of treatment, route of administration, etc.)
4) What specific things would you look for in an ideal treatment for your condition? What would you consider to be a meaningful improvement in your condition that a treatment could provide?
5) What factors do you take into account when making decisions about selecting a course of treatment?