On March 8, 2021 the FDA held it's very first Patient-Focused Drug Development meeting on vitiligo. It provided the vitiligo community a unique opportunity to speak directly to FDA staff, representatives of biotech companies and researchers, and other key stakeholders in vitiligo drug development.
This meeting was critical to ensuring the FDA has a thorough understanding of the vitiligo patient experience. During the meeting, experts discussed past and ongoing research into vitiligo, while vitiligo spokespersons and activitsts shared their stories on how vitiligo has affected their lives and what they are looking for in an ideal treatment. Live polling was conducted to capture patient viewpoints on disease experience as well as potential benefits, risks, and preferences for treatment.
With the lessons and takeaways from the patient community in hand, FDA will be able to better review and approve therapies to meet the needs of the vitiligo community desires. The online meeting also gave biopharmaceutical companies the information they need to help them develop therapies that will target the most burdensome symptoms of the disease.
The meeting materials are now available on the FDA's website:
This meeting was the first of its kind for vitiligo, but it doesn't end there. Your voice and perspectives are essential for all of us to demonstrate that vitiligo deserves a coordinated effort to develop effective threatments as soon as possible.
If you or your family member suffer from vitiligo, please share any additional comments about your experience to the FDA's public docket.
FDA is looking for written comments about vitiligo symptoms and daily impacts, thoughts on treatment options, and thoughts on what patients would look for in an ideal treatment for vitiligo. The key themes and takeaways from the survey will be compiled into a Voice of the Patient report.
The public docket will close on May 10, 2021, so please be sure to submit any written comments before that date.
In addition to the public docket, participants can also submit comments through the crowdsourcing campaign. FDA will use the input from the public meeting, the docket and this crowdsourcing campaign to identify key themes and takeaways that capture what matters most to individuals with vitiligo and their loved ones.
The crowdsourcing campaign will be open until April 2, 2021.
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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.