Face Blind UK is an independent organisation, set up and run by people who have Face Blindness themselves. It is a Community Interest Company aiming to
- Raise awareness
- Provide information and support
- Create networks
Members
From a handful of members in 2015 Face Blind UK now has over 600 members. Membership is free and we are delighted that members are very supportive and engaged.
The majority of members (83%) have Developmental Prosopagnosia and approximately 7% have Acquired Prosopagnosia. We have a growing number of parents of children with prosopagnosia (3% of our current membership) with the remainder of those on our mailing list being students, teachers, authors and researchers.
We welcome parents as members, but do not accept children or young people as members until they reach the age of 18.
While most members are from the UK, we also have associate members from around the world, from Australia to the Americas. With the international nature of information sharing that the web has brought, we are happy to embrace members from abroad and keen to support the establishment of similar support groups in other countries. However, in terms of our resources we are conscious of using these with a focus on the UK in line with the objectives of the organisation.
Communications & Meetings
Communication with members is by email, with updates, newsletters and surveys distributed between two and six times a year. Face Blind UK is registered with the Information Commission and treats all individual contacts as completely confidential, would never pass on contact details without the specific instruction of the member concerned.
In the early days Face Blind UK held London based meetings, but with the pandemic, we moved meetings on to Zoom. Initially we organised just an annual gathering on Zoom, but in 2023 with support from the National Lottery we ran a series of more specialist meetings – these included:
- A focus on coping strategies
- A book group
- A meeting for parents of children with Prosopagnosia
- A meeting for members with Acquired Prosopagnosia
- A talk on Visual Perception and Neurodiversity in Prosopagnosia by neuroscientist John Towler from Swansea University
They were well attended and were felt to provide a valuable space for people with prosopagnosia to share experiences, discuss strategies and exchange new ideas. The plan is to continue to develop this way of bringing members together.
To join the mailing list and receive the latest news on the Zoom meeting and other updates you can sign up as a member.
Information and Resources
New members are offered a small resource pack, with basic information about prosopagnosia and about Face Blind UK itself, together with a badge and an alert card.
We aim to provide the majority of information via the website, www.faceblind.org.uk, but we also answer more specific questions individually, by email. The website includes a growing number of factsheets, FAQs and links to podcasts, books and other associated organisations.
Contributions from members help us to collect information, and build new resources.
Directors
The organisation is managed by a group of directors. Face Blind UK’s governing document stipulates that at least three quarters of the directors are people with first-hand experience, so that that organisation will always be led by its members by people who understand the nature of prosopagnosia and its impact on everyday life.
