Date: 08/25/2025

Dear FIRST Community Member (Affected with Ichthyosis or Caretaker),

Your story can spark real change.

FIRST is launching its first-ever Patient Voice Survey today, and we need to hear from you! This quick 10-minute survey is your chance to share what life with ichthyosis or related skin disorders is really like—from the daily challenges and mental toll, to what support and treatment options could make the biggest difference.

Your input will help guide future efforts to push for more effective treatments, inform clinical guidance, help educate clinicians, build stronger support programs, and improve the quality of life for patients across the spectrum of conditions.

Help us paint a picture of the ups and downs of the patient journey and experience. Or, be a part of our collective effort to tell the patient story and improve care overall.

Taking part in the survey is quick. It’s confidential. And it’s your chance to make a difference. Take the Survey Now -