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Proudly Celebrating 45 Years In our Ichthyosis Community
If you or a family member has ichthyosis or a related skin type, and is in need of support, education, connection, and compassion, you have come to the right place.
We were chartered as a nonprofit in 1981 and we are currently the leading patient advocacy organization in the world for individuals with ichthyosis and related skin disorders.
We are deeply dedicated to improving lives and seeking cures for those affected by ichthyosis and related skin types.
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Recent News & Articles
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DATE: 5/8/2026
Approval Received for Ammonium Lactate Cream
Zydus Lifesciences recently received final approval from the U.S. Food and Drug Administration (USFDA) for its 12% Ammonium Lactate Cream,…
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DATE: 5/08/2026
Recipient of the Perseverance Award
Nine-year-old Zoe Ng of Singapore, who lives with harlequin ichthyosis, was recently honored with the Perseverance Award at the AWWA…

Your Support Changes Lives
Help us fund life-changing research and provide essential support for families living with ichthyosis and other rare skin conditions.
Here are some examples of how your support matters:
- $25: Provides a “New Family” welcome kit.
- $100: Funds one week of cream
- $500: Sponsors a scholarship for the National Conference
Interested in giving via your DAF, stock portfolio, or IRA? Read more on Ways to Donate.
Personal Voices & Stories