Here to Help
We support individuals and their families in the United Kingdom whose lives are affected by Diamond Blackfan Anaemia Syndrome; a rare genetic bone marrow disorder.
DBAS UK is a registered charity (1083179) run by an elected Committee of volunteers and governed by a written constitution.
We deliver support, research and hope to the DBAS community by brining families together to share their experiences, communicate the latest research and medical information and raise funds to support those with DBAS in the UK.
Support When it's Needed Most
DBAS UK provides invaluable support to patients and their families at a difficult and confusing time.
We do this with the help of our members and supporters, our website, information leaflets and a telephone support line.
We also hold an annual conference for all DBAS families in the UK. The weekend provides respite and mutual support for patients and brings parents and carers together with medical professionals. Together we improve access to information and aid the consistency and quality of care across the country.
Research, Care, Hope
Advances in medical science and the strengthening of our own networks within medicine have created opportunities for us to lead some exciting and important research projects.
We also plan to fund a UK patient registry, to aid both existing and future patients by documenting each case and providing a central resource for doctors.
Furthermore our project to create a UK Standard of Care document is designed to help the entire DBAS community. By removing the ambiguity and inconsistency from care around the country, we can provide a consistent template for care in the future.
DBAS UK delivers support, research and hope to the DBAS community.
We bring families together to share their experiences, communicate the latest medical information and raise funds to support those with DBAS in the UK
