Lara Bloom, International Executive Director at the Ehlers-Danlos Society.
On Tuesday 23 May 2017, we held our Annual General Meeting to celebrate the achievements of the Rare Disease UK campaign and the rare disease community in 2016. The event was held at the Royal College of Paediatrics and Child Health and was attended by patients, patient representatives, clinicians and others working in the field of rare diseases.
Following an introduction from Alastair Kent OBE, Chair of the Rare Disease UK campaign, we were delighted to welcome three speakers to present at the event. Lara Bloom, International Executive Director of the Ehlers-Danlos Society discussed the campaigning work of the organisation and shared her personal experiences of living with the condition, highlighting the impact rare diseases can have on patients’ mental health. Sue Millman, CEO of Ataxia UK then talked about the role of patients in improving clinical trials and research for new treatments. Gemma Turner, Disability Trainer and blogger living with Brittle Bone (Osteogenesis Imperfecta), shared her experiences of accessing medical care for common conditions when living with a rare condition.
Gem Turner, Disability Trainer and blogger living with Brittle Bones.
Jayne Spink, the new CEO of our parent charity, Genetic Alliance UK, closed the event with a discussion of Rare Disease UK’s future activities for 2017. These include a research study looking at the relationship between rare disease and mental health, a children’s and young people’s patient experience report and an All Party Parliamentary Group hearing on access to medicines.
To read more about the work of the Rare Disease UK campaign’s work in 2016, please see our Activity Report for 2016 which can be accessed here. You can view our Storify of the event here.