Jewish Genetic Disorders UK has produced what is thought to be the first review of awareness, education and services of Jewish genetic disorders in the country.
The report summarises findings from a year-long consultative dialogue with key stakeholders in the Jewish, patient group and medical communities.
Jewish Genetic Disorder UK's executive director Katrina Sarig said: "We have been encouraged by the interest in this project. We now have an opportunity to make a significant difference to the community, through raising awareness and improving the management of these potentially devastating genetic conditions."
The key findings of the research were: awareness of Jewish genetic disorders is low among community organisations and health professionals, with the exception of Tay-Sachs and BRCA 1 and 2 associated cancers; there is no comprehensive programme of awareness-raising; Tay-Sachs is the only Jewish genetic disorder for which NHS carrier screening is available; genetic carrier testing for the other disorders are limited; obtaining a diagnosis for many Jewish genetic disorders is often a lengthy process, and little support exists for the rarest conditions.
The research has allowed JGD to identify measures that need to be put in place. These include: a targeted programme of awareness-raising; a screening programme expanded beyond Tay-Sachs to include a broader panel of Jewish recessive genetic disorders and an information system to guide those seeking expert advice.
In response to the dialogue with JGD UK, work is already underway to implement these recommendations.
To get more from community, click here to sign up for our free community newsletter.