Breaking Down Barriers: understanding Genetics Together
We are the main funder for Breaking Down Barriers (BDB) which supports a consortium of charities so that they can effectively reach all communities at risk of genetic conditions.
This national project, established and funded by the Trust with Alstrom Syndrome UK, was established to spread expertise on how to reach, support and inform those communities particularly at risk of genetic conditions but who are significantly underserved. With its understanding of engaging all communities in the UK to access health services and support, BDB is also now very well placed to advise and support other organisations as the issue of health equity has moved centre stage both because of the pandemic and the Black Lives Matter movement.
BDB grew from previously funded work with Alstrom Syndrome UK (ASUK) which was designed to reach those UK communities and families from South Asia suffering from this specific rare genetic condition: raising awareness, increasing referrals and providing access to specialist services. BDB has taken this approach further on a national scale, to benefit larger numbers of people and communities and to develop new policies and practices. There is a particular interest, though not exclusive, on autosomal recessive conditions where both parents are carriers. BDB works with its member organisations including patient support charities, regionally based community groups and umbrella bodies, to increase reach and support for all affected communities. BDB is also increasingly represented on national and international committees and research teams. These include Genome UK, UK Rare Diseases Framework, the CONCORD Study and the EXPRESS Study. NHS England has also asked BDB to share its knowledge with charities and NHS service providers.
In 2019 ASUK took over the management of BDB and the dedicated BDB staff, who remain crucial to the success of the project, bring excellent knowledge and experience of reaching and supporting those with genetic conditions; representative positions on other national and international bodies; expertise in genetic counselling, and fluency in South Asian languages. With ASUK leadership and the supporting role of other ASUK staff, BDB has developed a very successful social media presence; offers remote training and webinars for members and interested organisations; gained new funding from the National Lottery Community Fund and crucially continues to provide individualised support for each of the member organisation as they work to improve their inclusive services.
Real progress is being made. One member organisation has used the support from BDB to develop a Diversity Strategy Group which is making improvements to its recruitment strategy; engagement with healthcare providers, and in the way it engages with its community. Another member has increased its engagement with people from ethnic minority communities by 160% within 1 year.
The diverse group of member organisations represents people with very rare conditions, with as few as 70 of their own members, to those supporting people with more common conditions and up to 13,000 members. Working also with some umbrella organisations in the charity sector, BDB now supports over 360,000 individual members, plus families, carers and healthcare professionals.