About Us

DBA UK is a registered charity (1083179) run by elected volunteers and governed by a written constitution. We aim to deliver support, research and hope to the DBA community by brining families together to share their experiences, communicate the latest medical information and raise funds to support those with DBA in the UK.

With the help of our members and supporters, our website, information leaflets and telephone support line will provide invaluable support to patients and their families at a difficult and confusing time. We also hold an annual conference for all DBA families in the UK. The weekend provides respite and mutual support for patients and brings parents and carers together with medical professionals to improve their access to information and aid the consistency and quality of care across the country.

We hold the event at a PGL activity centre where patients with DBA can meet and gain confidence and reassurance from sharing their experiences, away from the daily grind of their treatment routine.  Thanks to your support, we will treat them to a weekend of adventure in a happy and inclusive camp atmosphere.

During the conference patients and families can attend group discussions and 1-2-1 sessions with leading clinicians to explore DBA and gain vital understanding of their children’s condition and how they can improve their quality of life. The annual DBA UK conference empowers parents with the knowledge of best practices from specialist consultants and experienced families enabling them to improve the care they receive. Parents are able to take away vital information on equipment choices, nutrition programs, tips for dealing with medications and updates on future developments in DBA care, all of which are otherwise unavailable to them.

In addition to our conference, advances in medical science and the strengthening of our own networks within medicine have presented an opportunity for us to lead some key research projects which we are excited about funding in the coming year.  We also plan to fund a UK patient registry which will 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 DBA community by removing the ambiguity and inconsistency from care around the country and providing a consistent template for care in the future.