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Focus Families
Web: www.focusfamilies.org
Focus - SOD/ONH Support Network - was started by a small number of families who have children with the condition septo optic dysplasia or optic nerve hypoplasia. They are an e-mail support group who aim to:
- Provide a point of contact to any person within the UK who wishes to know more about the syndrome septo optic dysplasia or optic nerve hypoplasia.
- Provide information about this syndrome to parents, families, carers and professionals.
- Link families who have children with septo optic dysplasia or optic nerve hypoplasia, by location, age or similarity of syndrome characteristics.
- Organise an annual conference, to enable families who have children with septo optic dysplasia or optic nerve hypoplasia to meet, and to have access to speakers who are specialists in this condition.
- Work with professionals involved in septo optic dysplasia and optic nerve hypoplasia, in order to compile a set of guidelines to ensure correct medical intervention at all times throughout the children's lives.
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Disclaimer: Patient UK has no control of the content of the above links. Inclusion does not imply endorsement by Patient UK.