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Support for patients and families with Bestrophinopathies
Support and advice
Eye-YPAGAn advisory group for children with eye conditions which meets four times a year in London. |  |
Macular SocietyOffer information, support, counselling and advice for patients with macular disease. Support research into macular disease. |  |
Macular Society WAYPNetworking 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 UKProvide support for those affected by inherited sight loss. |  |
RNIBSupport for people with vision loss. https://www.rnib.org.uk/eye-health/eye-conditions/best-disease-vitelliform-macular-degeneration |  |
Friends of MoorfieldsSupports patient and staff at Moorfields Eye Hospital. https://friendsofmoorfields.org.uk/what-we-do/friendz-children-and-young-people/ |  |
Rare DiseaseThe national campaign for patients with rare disease, raising the profile of rare disease across the UK. |  |
Rare Disease DayA yearly event to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. |  |
Social Media Groups
Best disease (vitelliform macular dystrophy) BVMD - Facebook GroupA patient led Facebook support group to share experiences and information |  |
Macular Society - Working Age & Young People Group - Facebook GroupThe Macular society runs a working age and young people group on Facebook |  |
Charities funding research into inherited macular diseases
Macular SocietyFunds research into macular disease, including bestrophinopathies | |
Fight for SightFunds research to prevent sight loss and treat eye disease. |  |
Moorfields Eye CharityFunds research projects at UCL Institute of Ophthalmology and Moorfields Eye Hospital. |  |
Retina UKFund research into inherited vision loss. https://retinauk.org.uk/research/research-we-fund/innovation-fund-projects/ | |