Support for patients and families with Bestrophinopathies
Support and advice
An advisory group for children with eye conditions which meets four times a year in London.
Offer information, support, counselling and advice for patients with macular disease. Support research into macular disease.
Macular Society WAYP
Networking and information for working age and young people with macular disease,
Contact: colin.daniels@macular society.org
Advice and Information Service 0300 3030 111
Provide support for those affected by inherited sight loss.
Support for people with vision loss.
Friends of Moorfields
Supports patient and staff at Moorfields Eye Hospital.
The national campaign for patients with rare disease, raising the profile of rare disease across the 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.
Social Media Groups
Best disease (vitelliform macular dystrophy) BVMD - Facebook Group
A patient led Facebook support group to share experiences and information
Macular Society - Working Age & Young People Group - Facebook Group
The Macular society runs a working age and young people group on Facebook
Charities funding research into inherited macular diseases
Funds research into macular disease, including bestrophinopathies
Fight for Sight
Funds research to prevent sight loss and treat eye disease.
Moorfields Eye Charity
Funds research projects at UCL Institute of Ophthalmology and Moorfields Eye Hospital.
Fund research into inherited vision loss.