- Posted on Mar 2, 2018
Coreen our Support Development Officer attended the Rare Disease Day event held at Royal National Orthopaedic Hospital and fought off the “beast from the east” to get there, albeit arriving a little later than expected.
The event was open to patients and families with all rare bone disease. There were talks from Dr Keen and Dr Bubbear on current research, we heard from 100,000 Genomes project and the Rudy Study, Dr Benjamin spoke about transitions and Coreen spoke about the role of patient support groups and the BBS. There was plenty of time for discussions and questions and to hear opinions from patients about both research and NHS services.
It was a great day despite the weather and difficulties faced by people getting there. But good discussions were held and there are plans for similar events to held in the future.