Rare Disease Day 2016
BBS Members nationwide attended rare disease day events up and down the country, to celebrate RARE DISEASE DAY 29th February. Theresa and Aiden Connor attended Scottish Parliament in Edinburgh. The event covered perspectives from somebody who lives with Progressive Supranuclear Palsy (PSP). Jamie Hepburn MSP, Minister for Sport, Health Improvement and Mental Health announced £6 million investment in the Scottish Genomes Partnership and the Connor family saw a presentation from Professor Zosia Miedzybrodzka of the University of Aberdeen.
At our recent BBS Patient Day held in Belfast members were invited by Christine Collins (Chariman of NIRDP) to a series of events, and Ambassador Lesley Ann Starrett and son John attended the Long Gallery Event at Stormont in Northern Ireland, where members heard Health Minister Simon Hamilton MLA talk about his vision for the NI Rare Disease Plan.
We were delighted that Birmingham Support Group Coordinator, Gursharan Kaur
was at the reception at House of Commons to represent the BBS. Speaking at the event was Alastair Kent OBE of Genetic Alliance UK; George Freeman MP, Minister for Life Sciences; Dr Gina Radford, Deputy Chief Medical Officer; Liz Kendall MP; Fiona Marley of NHS England; Ben Howlett MP, all gave insightful, encouraging talks to the 150 attendees, 87 different organisations/ diseases who were represented.
Fiona Marley from NHS England stressed the importance of an early diagnosis to prevent a potentially damaging and life threatening prognosis and endorsed the UK Strategy for Rare Diseases commitment to ‘work to achieve reduced times for diagnosis of rare diseases. As, delayed diagnosis can have a significant impact on a patient’s health, treatment options and even life expectancy’.
You can read more about activity in all the other Parliament areas here