Foundation for Ichthyosis & Related Skin Types, Inc. ® (FIRST) Celebrates 35 Years

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In January of 1981, the very first official support group for patients affected by ichthyosis and related skin types opened its doors in San Francisco, California. Thirty-five years later, that very same local support group has evolved and grown into the leading patient advocacy organization for ichthyosis worldwide.

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Bailey Pretak, affected with lamellar ichthyosis, has been supported by FIRST for nearly 27 years.

FIRST has been there for me and my mom since I was born. Since ichthyosis is so rare, we would have been completely lost without this organization by our side.

On January 2, 2016, the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) Celebrates Its 35th Anniversary.

FIRST opened its doors in 1981 to support and connect local patients and their families. For the past 35 years, it has grown into the global leading patient advocacy organization for ichthyosis and related skin types. Today, FIRST maintains a database of over 16,000 members worldwide, has funded nearly $1.7 million in research grants, hosts national and international conferences, and houses a comprehensive library of resources, programs and support materials for those affected with ichthyosis and related skin types.

Find out more about ichthyosis.

Read stories from the past 35 years, of affected families and individuals who have been supported by FIRST.

“There is no cure for ichthyosis, only treatments,” said Jean Pickford, CEO of FIRST. “Technology has certainly spurred our patient outreach over the past decade, but dedication and compassion has also played a major part. The commitment of our board of directors, volunteers, staff, and world renowned physicians and scientists, some of whom have been here from the very beginning, is unprecedented. We are all working together to make a difference in our members' lives.”

According to FIRST, each year, more than 16,000 babies are born with some form of ichthyosis, of those, approximately 300 are born with a moderate to severe form. This disease affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.

Read stories from the past 35 years, of affected families and individuals that have been supported by FIRST.

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Maureen Neville
FIRST
+1 (215) 997-9400
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