What an incredible Rare Disease Day! From powerful conversations, podcasts and presentations in Westminster to advocates, families and organisations coming together to raise awareness. Rare Disease Day is observed every year on the 28th February (or on the 29th if it falls on a leap year), the rarest day of the year! Since itsRead more
Rare Disease Day – All About Equity Rare Disease Day falls on the last day of February each year – 28th February 2026 (or on a leap year the rarest day of the year 29th February) Rare Disease Day this year is all about equity — and what it really means for people living withRead more
This year, the Rare Disease Day reception at Westminster welcomed the rare disease community. People with lived experience, organisations at the heart of this work and policy makers discussed everything rare, the progress made to date and the areas which still need addressing. Rare Disease Day is an annual international event on the last day ofRead more
We have joined forces with the GRACE project which stands for Genetics Research Awareness via Community Engagement. The Grace project is a team of researchers who are passionate about all things genetics related, and their mission is to increase knowledge and understanding of this fascinating field, for all. They match our values as they areRead more
Community Outreach in Action! A key area of our work moving forward is our Community Outreach. We have been running a successful pilot project in West Yorkshire and the impact and engagement through this project has been fantastic. We have been delivering ‘Genes, Family History and Your Health’ creative workshops within diverse and often underserved communities inRead more
Let’s Get it Right for Young People T-KASH (Transition – Knowledge and Skills in Healthcare) are FREE resources which were originally created in 2015 by young people from the Alström Syndrome UK (ASUK), Hear My Voice Youth Forum. The resources are designed to support young people, families, and healthcare professionals, to help everyone understand the transition journey and the things thatRead more
Department of Health and Social Care (DHSC) 10 Year Health Plan Workshop Consultation In February 2024, BDB and DHSC worked in partnership to deliver a workshop as part of the government’s consultation on the new 10-Year Health Plan. The aim of the workshop was to include the voices of people from diverse, marginalised 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
