Due to extenuating circumstances, this MEETING IS POSTPONED until further notice.
On Monday March 30, 2020, FDA is conducting its first public meeting on Patient-Focused Drug Development for Vitiligo.
The meeting is intended to allow FDA to obtain patient perspectives on the impact of vitiligo, including on daily life, patient views on treatment approaches, and decision factors taken into account when selecting a treatment.
You can participate in three ways:
- Register, attend the meeting and take active part in discussions.
- Join webcast and comment throughout the live stream.
- Submit your online comments before the meeting.
WHEN: Monday, March 30, 2020 at 1 p.m. to 5 p.m.
WHERE: FDA White Oak Campus 10903 New Hampshire Ave. Building 31, Great Room Silver Spring, MD 20903
Topic 1: Health effects and daily impacts that matter most to patients
- Which aspects of vitiligo have the most significant impact on your life? (Examples may include depigmentation, itching, sensitivity to sunlight, etc.)
- 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 vitiligo? (Examples of activities may include participating in social events, sports, being outside in the sunlight, etc.) How does your vitiligo and its impacts affect your daily life on the best days? On the worst days?
- How has your vitiligo changed over time? How has your vitiligo changed from childhood to adulthood (such as vitiligo severity, disease acceptance)? Would you define your vitiligo today as being well-managed?
- What worries you most about your vitiligo? Is there a particular body area affected by vitiligo (such as face, hands, limbs) that is of most concern to you?
Topic 2: Patients’ perspectives on current approaches to treatment
- What are you currently doing to help treat your vitiligo? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as diet modification.) How has your treatment regimen changed over time, and why?
- How well does your current treatment regimen treat the most significant aspects of your vitiligo? For example, how well do your treatments improve your ability to do specific activities?
- What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, depigmentation of affected area is more noticeable, going to the hospital for treatments, etc.)
- Assuming there is no complete cure for your vitiligo, what specific things would you look for in an ideal treatment for your vitiligo? Is there a particular body area affected by vitiligo (such as face, hands, limbs) that you would prioritize for treatment?
- What factors do you consider when making decisions about selecting a course of treatment?
- Isn't it just a cosmetic disorder?
Contrary to popular belief, vitiligo is not a cosmetic disorder but a systemic disease affecting the largest body organ and other vital systems, with multiple comorbidities. Fo...
- Can a gluten-free diet help with vitiligo?
It's very unlikely. We have specifically looked into claims that gluten-free diet may ease symptoms of vitiligo, or completely reverse it, and found no firm scientific evidence ...
- I have vitiligo: will my children have vitiligo, too?
Children born to parents who both have the disorder are more likely to develop vitiligo. However, most children will not get vitiligo even if one parent has it. In children wit...
Our work is entirely funded by private donations – we receive no money from government. Your money will help us continue funding research into vitiligo and supporting people affected by the condition.
Though it is not always easy to treat vitiligo, there is much to be gained by clearly understanding the diagnosis, the future implications, treatment options and their outcomes.
Many people deal with vitiligo while remaining in the public eye, maintaining a positive outlook, and having a successful career.Copyright (C) Bodolóczki Júlia
By taking a little time to fill in the anonymous questionnaire, you can help researchers better understand and fight vitiligo.