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Get Connected

Support for patients and families with Bestrophinopathies

Support and advice

Eye-YPAG An advisory group for children with eye conditions which meets four times a year in London. https://generationr.org.uk/eye-ypag/
Macular Society Offer information, support, counselling and advice for patients with macular disease. Support research into macular disease. https://www.macularsociety.org/
Macular Society WAYP Networking and information for working age and young people with macular disease, https://www.macularsociety.org/working-age-young-peoples-service-wayp Contact: colin.daniels@macular society.org Advice and Information Service 0300 3030 111
Retina UK Provide support for those affected by inherited sight loss. https://retinauk.org.uk/
RNIB Support for people with vision loss. https://www.rnib.org.uk/eye-health/eye-conditions/best-disease-vitelliform-macular-degeneration
Friends of Moorfields Supports patient and staff at Moorfields Eye Hospital. https://friendsofmoorfields.org.uk/what-we-do/friendz-children-and-young-people/
Rare Disease The national campaign for patients with rare disease, raising the profile of rare disease across the UK. https://www.raredisease.org.uk/
Rare Disease Day A yearly event to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. https://www.rarediseaseday.org/

Social Media Groups

Best disease (vitelliform macular dystrophy) BVMD - Facebook Group

A patient led Facebook support group to share experiences and information

https://www.facebook.com/groups/437399443094101

Macular Society - Working Age & Young People Group - Facebook Group

The Macular society runs a working age and young people group on Facebook

https://www.facebook.com/groups/2516963201962582

Charities funding research into inherited macular diseases

Macular Society Funds research into macular disease, including bestrophinopathies www.macularsociety.org/about/media/news/
Fight for Sight Funds research to prevent sight loss and treat eye disease. https://www.fightforsight.org.uk/
Moorfields Eye Charity Funds research projects at UCL Institute of Ophthalmology and Moorfields Eye Hospital. https://moorfieldseyecharity.org.uk/
Retina UK Fund research into inherited vision loss. https://retinauk.org.uk/research/research-we-fund/innovation-fund-projects/