Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST)
Rating: 4 stars 2 reviews
Location: 2616 N. Broad Street Colmar PA 18915 USA
Our mission is to educate, inspire and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy and research funding for better treatments and eventual cures.
Programs: Our signature event, the National Family Conference, provides attending families an opportunity to forge unforgettable connections with each other and to consult with leading medical experts. FIRST also hosts smaller one-day Regional Meetings. FIRST officially launched a Research Grant program in 2006. This program promotes and strengthens investigation into the causes, treatments, and potential cures for ichthyosis. Summaries of the many projects that have been funded by FIRST are available on our website.
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We learned of FIRST in 2005 when our son was born and diagnosed with Congential Ichthyosiform Erythroderma (also known as ARCI). We quickly learned they were the only organization of its kind in the US dedicated to helping families living with or caring for others with ichthyosis. The disease is very rare and we received conflicting and sometimes very frightening information on what our son’s life would be like. FIRST had so much information available that helped us to manage our son’s condition, find good doctors, and to be much less afraid. We now have two children with ichthyosis and we continue to use FIRST as a source of information and encouragement for navigating the condition, the many medical implications and for helping our children. Without FIRST, we would be navigating this disease completely on our own.
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When our son was born with a collodian membrane covering his body, and the doctors in our major-city hospital had to run to the medical library to be able to diagnose him, FIRST came into our lives as a comforting and knowledgeable resource. This caring advocacy organization has made a tremendous impact in promoting awareness of this condition, how to alleviate its symptoms and, through funded research, how to better understand its underlying causes. Insurance companies turned down our claims saying ichthyosis was "cosmetic." I know it can be life-threatening. FIRST is the only group that understands and acts on this knowledge.
I've personally experienced the results of this organization in...
-- receiving literature -- attending family conferences -- receiving doctor & clinical trial referrals -- receiving accurate diagnosis -- understanding how to manage my son't skin condition -- understanding the emotional impacts of ichthyosis
If I had to make changes to this organization, I would...
Strengthen the individual family outreach/ caring dimension