RAREsummit19

speaker profile
 
 

Alastair KENT, OBE

Expert in policy development and patient engagement for health and medical research in rare and genetic diseases

Cambridge Rare Disease Network - RAREsummit19 | Alastair Kent 1

Thought Leader Keynote: Reflecting on the successes and challenges in rare diseases, and a vision of the future

Bio: Alastair was the executive director of Genetic Alliance UK
(the UK alliance of over 200 patient support groups for patients and families with rare and genetic disorders) for almost 25 years. In that capacity he was actively engaged in developing policy and practice in biomedical research and service development that would reflect and respect the needs and expectations of patients and families affected by
serious, chronic and life limiting diseases that are rare, genetic or which arise from a combination of both these factors.

Alastair worked at a national, European and international level to ensure that the voice of patients and families was heard and acted on in situations where decisions are taken and plans are made. He has been a member of many committees and working groups and has lectured and published on a wide range of issues relevant to patient and family needs and expectations.

Alastair was made OBE for services to health care in 2011, and elected a Fellow of the Royal Society of Arts in 2017. Since retiring from Genetic Alliance UK he has continued to work on behalf of patients and families.

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