champ1 patient support group

CHAMP1 Patient Support Group

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.

This site can be used to inform, share, support, and create awareness for families diagnosed with the CHAMP1 gene mutation.

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.

Aims of CHAMP1 Patient Support Group:

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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