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Asya Choudry, BDB’s Community Engagement Manager has joined Jnetics for their screening event at JCoSS, Jewish Community Secondary School. This event is taking place as part of the GENEius programme, a comprehensive education and screening initiative targeting young Jewish adults which was launched by Jnetics in 2017. GENius aims to make Jewish Genetic Disorders educationRead more
On the last day of February every year the rare disease community comes together to raise awareness of rare diseases and their impact. The key message this year is that:Rare is many worldwide.Rare is strong every day.Rare is proud everywhere. You can find out what is going on around the world, and what events are happeningRead more
Check out this fantastic video from one of our members Metabolic Support UK. This video is part of their Patient Insight Breaking Down Barriers Series, which explores the impact that a rare disorder can have on patients and families from the BAME community. In this video, Mum Sabrina shares her stories and experiences of raisingRead more
The Department of Health and Social Care has published its latest update to its Rare Disease Strategy implementation plan. This is the second iteration of this document, following the previous progress report that was published in February 2019. The document reviews DHSC’s progress on implementing the Strategy and takes a forward look at outstanding actionsRead more
During this Covid-19 pandemic, we are all bombarded with so much news, how do we know what is fact or fiction? It is important that we listen to the facts, so we can make informed choices for ourselves and our loved ones. One area of concern has been about the Covid-19 vaccine, which is nowRead more
The small charities coalition have arranged a LGBT session about how our language makes a difference. Tuesday 2nd February 2021 from 15:00 – 16:00 This short session will explore some of the more common terms used in relation to discussions with and about LGBT communities. Speaker: Yassine Senghor Yassine Senghor from Impact Culture. Yassine isRead more
Our training about Bereavement and Loss was provided by the charity Cruse. Our trainer, Elaine was extremely insightful on this topic, not only looking at grief and loss but how this can affect different communities and cultures. Cruse provide lots of useful resources and information on their website, you can click HERE to view these and download.Read more
