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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.

  • To give new families hope for their children’s future through the shared experiences of older children in the group.

  • To link families in similar situations and areas.

  • To raise awareness of CHAMP1 with professionals and other interested individuals.

  • To share information on relevant support organisations.

  • 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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CHAMP1

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©2017 by CHAMP1 Patient Support Group. 

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