Acknowledgements

Many thanks to all those who were involved in making of the course The Power of Patient Advocacy in Genomics: Influencing Research, Clinical Practice and Decision Making

Course Lead Educator

Jillian Hastings Ward MBE, Patient advocate, UK

Course Educators

Jillian Banfield, PhD, Team Lead, Patient partnership, Institute of Genetics, Canadian Institutes of Health Research, Canada

Dr Michelle Bishop, Associate Director, Learning and Training, Wellcome Connecting Science, UK

Ai Ling Sim-Devadas, Deputy Director, Office of Patient Engagement (OPEN) Lee Kong Chian School of Medicine Novena Campus, Nanyang Technological University, Singapore

International Contributors

Dr Marie-Lyne Alcaraz, Programme Manager for the CRUK Cambridge Centre Women’s Cancers Programme, University of Cambridge, UK

Paul Arvidson, Patient Advocate & Writer, UK

Blayne Baker Garwood, Digital Resources Manager, Beacon for Rare Diseases, UK

Professor Sir Mark Caulfield, Professor of Clinical Pharmacology, William Harvey Research Institute, Queen Mary University of London, UK

Alex Davey, UK

Professor Bobbie Farsides, Emeritus Professor, University of Sussex, UK

Dr Richard Gorman, Assistant Professor in Ethics and Social Science, Brighton and Sussex Medical School, UK

Azure Hermes, Deputy Director, National Centre for Indigenous Genomics, Australia

Eve Hewitt, Scientific Projects Manager, Beacon for Rare Diseases, UK

Jessica Margrill, Co-founder & President, ReNU Syndrome United, USA

Isabel Jordan, Patient Partnership Advisor, Canada

Lynn Mendonza, Patient Partner committee member, Institute of Genetics CIHR, Canada

Rebecca Middleton, Founder & CEO, Hereditary Brain Aneurysm Support (HBA Support), UK

Dr Rupesh Mishra, Vice President, Rare Diseases Society Nepal, Nepal

Dr Nchangwi Syntia Munung, Researcher, University of Cape Town, South Africa and Cameroon

Dr Shadiah Nassanga, Team Lead and Founder, Malaika Children Initiative and Patient Advocate and representative, Sickle Pan-African Research Consortium (SPARCO), Uganda

Lindsay Pearse, Co-founder & Vice President, ReNU Syndrome United, USA

Nabeelah Peerbhai, Patient advocate and Genetic Counsellor, Sickle Cell South Africa, SA

Lauren Roberts, Chief Executive Officer, Rareminds, UK

Arafa Said, Founder/ Executive Director, SCDP Community of Tanzania, Tanzania

Mr Alieu Badara W Sambou, Executive Director, Sickle Cell Association of The Gambia, Banjul Chapter, The Gambia

WCS Senior Education Developer

Dusanka Nikolic MSc MA

Reviewers

Dr Natalie Banner, Chief Ethics and Engagement Officer, Genomics England, UK

Reema Fanning, Patient Partner, Institute of Genetics Patient Partner Committee, Canada

Richard Stephens, Chair of the Cancer Research Advocates Forum UK and Chair of use MY data, UK

Carol Tsang Sandric, Patient Leader and Patient Advocate, Lynch Sydrome Patients’ Support Group, National Cancer Centre Singapore, Singapore and UK

Filming

Colin Ramsay DragonLight Films Ltd.

Wellcome Connecting Science team with special thanks to:

Associate Director, Learning and Training Dr Michelle Bishop

Learning Technologist Katherine Kaldeli

Project Coordinator Zoey Willard

Wellcome Connecting Science Marketing and Communications Manager Catherine Holmes

Course free images by Pexels, Unsplash, Canva and Freepik