Ichthyosis Support Network
The Ichthyosis Support Network offers our members moral support, practical advice, education and guidance, and resource information through telephone and email contact with volunteer peer counselors. Experienced support network coordinators and their volunteer peer counselors offer a voice of experience to others affected by the ichthyoses. Over the past year, eight new peer counselors have joined the network, but we can always use more. The network is particularly in need of people to represent the more rare forms of ichthyosis and related skin types, such as Palmoplantar Keratoderma, Pachyonychia Congenita, Pityriasis Rubra Pilaris, Epidermal Nevus, and Sjogren-Larsson Syndrome. The network is also in need of individuals who are fluent in a language other than English. Experienced young adults, adults, and parents of children with ichthyosis are welcome in all the disease networks. The more peer counselors that we have around the country, the better able we are to connect someone in need with a friendly voice close to home. The time commitment of a volunteer peer counselor is minimal, but the rewards are great. If you feel you have something to offer someone else struggling with your disease, please call the national office at 800-545-3286 or click here to find out more about how you can help.
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