We are on the hunt for a Patient and Public Involvement and Engagement (PPIE) Coordinator Thank you for your interest in the PPIE Coordinator role at Alström Syndrome UK and Breaking Down Barriers. This exciting new role reflects our ambition to further develop the support we offer to individuals and families living with rare andRead more
Background There is currently an under-representation of people from communities from non-European ancestry within bio- and tissue- banks. Many government policy agendas are focussed on the future of healthcare being based around precision medicine and there is a risk that healthcare disparities stand to increase, resulting in inappropriate medication and therapies for diverse and underrepresentedRead more
BDB FREE Event – Let’s Get Together Dates for your diaries: 26th September 2023 – London Registration will be from 9:30 am Start 10:00am Finish 5:00pm Lunch will be provided. This is the first opportunity for the BDB network to get together in person since lockdown! Our focus is on bringing the network together,Read more
Mental Health courses go live! Medics 4 Rare Diseases (M4RD) have launched a new range of online courses called ‘Mental Health and Rare Disease’. The course consists of 8 interactive lessons; each focuses on a different topic related to the challenges that living with a rare disease poses to a person’s mental health. Each weekRead more
On Tuesday 25th April 2023 the BDB Network came together to hear about the latest developments, how BDB can support you going forward and our plans for 2023, including the chance to all get together again with regional events! Don’t worry if you missed the session as you can click on the link below toRead more
What is Ramadan In 2023, Ramadan will begin on the 22nd March 2023 and last for 29/30 days. It is the holiest month of the year for Muslims as it is when the Qur’an was revealed to the Prophet Muhammad (PBUH). During the month of Ramadan, Muslims around the world will fast, meaning theyRead more
COORDINATING CARE: Learning from the experiences of people living with rare conditions We are delighted that members of the Alström Syndrome UK community were involved in the ‘COORDINATING CARE: Learning from the experiences of people living with rare conditions‘ report which has been published by Genetic Alliance UK on Rare Disease Day, to highlight theRead more
Happy Rare Disease Day! This day falls on the last day of February and aims to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers.You can read the Rare Disease Day ‘What is Equity for people living with a Rare Disease’ HERE Watch thisRead more
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
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
