Support Services For Parents of Newly Diagnosed Children
NOAH provides special support to parents with newly diagnosed children. Receiving a diagnosis of albinism can be shocking and frightening to many families, which is why NOAH has made great efforts to reach out to new families and make accurate information readily available to them and the medical professionals who work with them. NOAH's Rapid Responder Program connects new parents with other parents of children with albinism to share concerns and reassurance. Rapid Responders, who are specially trained, have strong knowledge of the medical, social and biological aspects of albinism and attend semiannual teleconference training sessions to sharpen skills and knowledge. For many new families, a conversation with a Rapid Responder is their first opportunity to receive honest, accurate information about albinism and to connect with someone in the albinism community who is willing to listen and offer support.
In 2008, NOAH announced the release of its first full-length book, titled Raising a Child with Albinism: A Guide to the Early Years. The book is a comprehensive resource guide for a family with a young child with albinism. Everything from the types of specialists you may encounter, early intervention services, self-esteem and sports are covered in detail. It’s full of practical advice and caring insights from experienced parents and adults with albinism. While the focus is on children from birth through first grade, there is a great deal of information and advice for parents of older children, too. Children and teens with albinism can also benefit from having a book full of pictures of children like themselves to look at and share with others.
Read more about this topic: National Organization For Albinism And Hypopigmentation
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