




Welcome! We are a Patient Support Group connecting families worldwide affected with CHAMP1 gene mutation.
Our aim is to gain a better understanding of the CHAMP1 gene mutation. But most importantly we provide a support network through which families can share their own experiences.
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This site can be used to inform, share, support, and create awareness for families diagnosed with the CHAMP1 gene mutation.
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We understand that when you discover that your child has a rare medical condition it can be very isolating and, as parents of children with the CHAMP1 gene mutation, we recognise the need for information and emotional support.
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Aims of CHAMP1 Patient Support Group:
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To offer support to families affected by CHAMP1.
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To give new families hope for their children’s future through the shared experiences of older children in the group.
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To link families in similar situations and areas.
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To raise awareness of CHAMP1 with professionals and other interested individuals.
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To share information on relevant support organisations.
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Support families through increasing public awareness of CHAMP1 by raising funds, organising events and publishing literature. ​​​
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The CHAMP1 Research Foundation
​To find out more information on the fantastic work our Foundation is doing click on the icon below:
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