The Albinism Fellowship is a charity that represents people with albinism living in the UK and Republic of Ireland. This year the charity celebrates its 40th anniversary.
Four years ago the Fellowship recognised it wasn’t doing enough to engage with people from black and Asian communities who have albinism. They began a new project and mission to improve support for their diverse community to become more inclusive.
How the Albinism Fellowship has been increasing black, Asian and ethnic minority ‘BAME’ diversity
The Fellowship’s Trustees recognised that the challenges faced by this section of the albinism community can sometimes be more intense than those faced by white people who have albinism; for instance, they have found these groups are increasingly likely to face prejudice, stigma and a lack of understanding from within their own communities.
This led the charity to focus efforts on following-up with contacts from black and Asian families. Trustees of the charity made efforts to meet face-to-face with people wherever possible and to really encourage them to come along to events.
There are now two parents of black and Asian children with albinism on the board of trustees, which has helped the charity to plan and be more inclusive to all members of the community. For example, it resulted in a family BBQ date to be planned around Ramadan, a time when many of the families would be fasting.
The Fellowship also used a large-one off donation to fund bursaries allowing families to attend the Fellowship’s residential conference in Derbyshire in 2017. This meant more black and Asian families were able to participate than ever before.
Another change was to the Albinism Fellowship’s basic information leaflet on albinism, which included incorporating new images from a diverse range of ethnic groups.
Grant funding from Breaking Down Barriers (BDB)
The charity is proud to have successfully applied for a £5,000 grant from BDB. BDB aims to strengthen the ability of patient organisations and support groups to develop supportive and inclusive services for individuals and families affected by genetic disorders, and to ensure that appropriate and accessible information is available. If you are interested in joining Breaking Down Barriers, or would like more information, visit the their website here.
The BDB funds will continue to help with the work and mission to improve the support provided for the Fellowships diverse community. It will go towards improving the Albinism Fellowship's website, to include a much better visual representation of the diversity of families and groups within the albinism community.
Adult & Family Weekend Conference 2019
Looking ahead to October 2019, when the Albinism Fellowship will be holding their next family and adults with albinism conference, the BDB grants will allow more people from the BAME community to attend. The Trustees are planning at least one session at the conference to be specifically aimed at black and Asian families. This will be run by two members, one from a South Asian background and the other an African background, both of whom have children with albinism.
Continuing to break down barriers
To increase awareness about albinism for people from black and Asian communities, as part of Jeans for Genes Day in September 2018, fellow member Precious and her family, from London, carried out a number of media interviews to explain what it is like to live with albinism. The Albinism Fellowship were incredibly grateful for the great work they did in helping to raise awareness.
An exciting future plan includes commissioning a short information and publicity video to raise awareness about the issues people in the BAME community with albinism face, and the support that the Fellowship can offer them. When the film is complete, the charity aims to use its large Facebook community and other social links to share the video and get the message out there of the support they can offer.
If you would like to know more about the Albinism Fellowship then please visit their website here.
Rare Revolution Editor