Alastair Kent

About Alastair

Alastair has particular expertise in policy development and patient engagement for health and medical research in rare and genetic diseases.

  • Strategic campaigning
  • Patient and family engagement
  • Public speaking
  • Chairing of meetings, working parties and committees
  • Organisational development for patient groups

Professional Experience


Chair of the UK Rare Disease Forum

This is the body responsible for securing stakeholder engagement in the UK Rare Disease Framework

Chair of the Rare Disease Advisory Group (RDAG) for NHS England.

RDAG advises NHS England on proposed service developments and policy changes. It also provides a coordinating role for the NHS in each of the four NHSs in the UK with respect to issues of patient access across borders within the UK

Member of the Genomics England (GeL) Ethics Advisory Committee.

GeL is the organisation established to deliver the 100,000 genomes project and secure the introduction of a genomic medicine service for patients in the NHS.

Other Appointments

Member of:-

  • International Science and Ethics Advisory Board for Roche
  • Expert Advisory Group for International Experience Exchange for Patient Organisations
  •  Gene People trustees (chair)
  • Congenica Patient Engagement and Advocacy Board (chair)


Alastair has been awarded:-

  • 2011 OBE for services to healthcare
  • 2017 FRSA for outstanding contribution to supporting families with genetic conditions
  • 2017 Communique Awards Healthcare Advocate of the Year
  • 2018 Lifetime Achievement Award from Eurordis, the European Rare Disease Organisation
With father and child at Birmingham Children's Hospital 1
At Birmingham Children's Hospital
At Black Pearl Awards Event holding Life Time's Achievement Award
Receiving a Lifetime Achievement Award
speaking at Birmingham Children's Hospital 2
Speaking at Midlands Rare Disease Event


Patient and family member of the European Commission’s (DG Health):-

1) Rare Disease Task Force

This developed the Commission Communication and the Council of Ministers Recommendation on Rare Diseases which led to the creation of National Plans/Strategies for improving services and support for rare disease patients and families in the Member States of the EU.

2) EU Committee of Experts on Rare Diseases/ Expert Group on Rare Diseases.

This was responsible for advising the Commission on progress in the implementation of National Plans and for supporting the development of Expert Reference Networks (ERNs) to boost awareness and share expertise in the care and management of rare diseases in the EU.
These were EU Commission official appointments.

Chair of the Stakeholder Forum of BBMRI-ERIC

(Biobanking and Biomolecular Research Infrastructure -European Research Infrastructure Consortium), a pan-EU consortium that supports high quality biomolecular research in health and disease across Europe

Chair of the Patient Advisory Group for Europabio.

Europabio is the EU wide trade association for biotechnology companies.

Founding patient member of the Orphan Medicinal Products Committee

(COMP) and Committee for Advance Therapies (CAT) of the European Medicines Agency.


Patient and family representative on:-
International HapMap Project Ethics Committee.

This was a global project mapping genetic similarities and differences between White Caucasians from the USA, Yoruba people from Nigeria, Han Chinese from the Beijing region and Japanese from Tokyo. It was funded by the US National Institutes of Health (NIH) and the Wellcome Trust (UK)

Interdisciplinary Committee of the International Rare Disease Research Consortium.

This consortium aims to promote rare disease R&D across the world by producing common standards, raising awareness and stimulating funding opportunities. It is funded by the European Commission, NIH (US), the National Institute for Health Research (NIHR) (UK) and many other medical research funders around the world.

International Steering Committee of PRISM

(Promoting Rare disease research through Sustainable Mechanisms) project.

Funded by the Canadian Institute for Health Research this has been a health economics lead multi-disciplinary programme of work at the U of Alberta seeking to develop appropriate methods for health technology evaluation for interventions for patients with rare diseases