BDB attend many events around Rare Disease, Genetics and EDI to raise awareness of this vital work and why it is so important. This increases the reach of the Breaking Down Barriers network so we can collaborate together and learn from one another, to ensure all families and individuals get the same level of healthcare and support services across the UK.
BDB also provide regular workshops and conferences. Pre-Covid these were face to face meetings, but we are now providing them virtually until 2023. These events provide fantastic opportunities for the network to come together and learn from one another.
‘One of the most important meetings that has happened in the rare sphere this year.
Thank you for all the work you do!’ Medics for Rare Diseases
‘Very interesting presentations and discussions. Great to be part of such a brilliant network of organisations.’ SMA UK
‘Great event yesterday, so good to hear about the developments – great strides happening at BDB!’ Sibs
We don’t ever stop learning and attend many events to learn from one another so we can then share our learning with the network.
We have been asked to share the journey of ASUK and BDB and our learning regarding equity, diversity and inclusion. We have delivered presentations at many events including those organised by Cambridge Rare Disease Network, Rare Beacon, Great Ormond Street Hospital, University College London, Department of Health & Social Care and 3M Healthcare.
We also take part in many meetings such as attending the Rare Disease Round Table meeting chaired by the then Secretary of State for Health and Social Care, Sajid Javed (pictured below). The purpose of the meeting was to explore health disparities, research and innovation. Our hope was that findings from this meeting would appear in the health disparities white paper that was in the process of being developed. Sajid Javed resigned before the paper was published so we are waiting to hear when this will be taken forward.
The Partnerships & Alliances website page goes into more detail about some of the further meetings and work we are involved in to influence change and changes at National/policy level.