The Rare Disease UK Annual Meeting will be held 13 June.
Speakers will include:
– Luke Pembroke, who is affected by severe haemophilia B
– Natasha Coastes, elite disability gymnast living with mast cell activation syndrome
– Dr Jayne Spink, Chair of Rare Disease UK and CEO of Genetic Alliance UK
– Amy Hunter, Director of Research, Genetic Alliance UK and Rosa Spencer-Tansley, Research Officer, Genetic Alliance UK
There will also be the opportunity to meet with a range of stakeholders working in rare diseases, including: academics, patients, patient organisations, clinicians, and other industry representatives.
It will also be an opportunity to find out more about the UK Strategy for Rare Diseases, the results from the mental health research of rare disease patients, and the experiences of children and young people affected by rare conditions.
Finally, you can hear about future Rare Disease UK activities and take part in discussions about social care provisions for families affected by rare diseases.
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