Name of Organisation: Albinism Fellowship UK & Ireland
Address: PO Box 2535, ILFORD, IG1 8NG
Telephone Number: 07946457979
Email Address: email@example.com
Registered Charity Number: SC009443
Prevalence of Condition (if applicable): 1:17,000
What is Albinism?
Albinism is a rare inherited life-long condition. People with Albinism do not produce sufficient melanin and this affects their eyes, skin and hair. People with Albinism are partially sighted, often have Nystagmus and have no natural protection from the sun.
What support does your organisation provide:
- Provide information about Albinism
- Raise positive awareness of the condition
- Arrange opportunities for people to meet and receive supported
- Encourage the sharing of resources
What do you provide for your members:
- Twice yearly magazine
- Facebook page
- Phone support
- Weekend conference every 2 years
- Regional meetings
Breaking Down Barriers project overview
(please state whether this is a year 1,2 or 3 project)
Our BDB year 2 project aimed to increase membership among Black and Asian families affected by Albinism and to improve the targeted support we offer.
- We improved representation of all races on our website and improved the website overall.
- We provided bursaries to Black and Asian families to attend our residential conference.
- We ran a Breaking Down Barriers workshop at our conference which led to a whatsapp group being set up.