RAREsummit speakers
Over 40 key opinion leaders are taking part in panel discussions, fireside chats, leading workshops and live innovation pitching.
Learn more about the impact of their work, their thoughts on rare disease progress, and hopes for the future of rare disease.
Dr Richard Scott –
Chief Medical Officer, Genomics England
Naomi Litchfield –
Global Patient Advocacy Lead, Bionical EMAS
Dr Tim Ringrose –
CEO & Co-Founder, Cognitant Group
Emma Sutcliffe –
SVP, Patient Insights & Solutions, Prime Global
Christine MacCracken
Head, Patient Strategies & Solutions, Janssen Pharmaceutical Companies
of Johnson and Johnson
Daniel Lewi –
Head of Business Development and Patient Advocacy, Pulse Infoframe, Co-Founder, Cure & Action for Taysachs Foundation
Rebecca Middleton –
Vice Chair, Participant Panel at Genomics England, Founder & Director Hereditary Brain Aneurysm Support
Dr Harvey Lodish –
Founding Member, Whitehead Institute for Biomedical Research; Professor of Biology & Biological Engineering, MIT
Steve Rees –
CEO, VP Discovery Biology, AstraZeneca
Dr Femida Gwadry-Sridhar –
CEO, Pulse Infoframe
Dr Tim Guilliams –
Trustee, CamRARE and Co-founder & CEO, Healx
Shirlene Badger –
Patient Advocacy Specialist, Illumina
Dr Kath Bainbridge –
Head of Genomics Science and Emerging Technologies, Department for Health and Social Care
Sharon Barr –
Senior VP, Head of Rare Disease Research & Product Development, Alexion AstraZeneca
Dr Salman Kirmani –
Chair Division of Women & Child Health, Aga Khan University, Karachi
Lauren Watson –
Rare Diseases Lead, Genomics Science and Emerging Technologies, Department of Health and Social Care
Sasha Henriques –
Principal Genetic Counsellor, Guy’s & St Thomas’ NHS Trust
Alex Lloyd –
Principal Advisor – Commercial Delivery Lead, Eastern AHSN
Sophie Muir –
Chair of Trustees, Timothy Syndrome Alliance (TSA)
Jess Duggan –
Patient Advocate & Volunteer, SynGAP Research Fund
Dr Abdur Rasheed –
Director Division of Pharmacy, Services, Drug Regulatory Authority of Pakistan (DRAP)
Nicola Miller –
Editor In Chief, Rare Revolution Magazine, Chair of Trustees, Teddington Trust
Sean Richardson –
General Manager, Alexion Astra Zeneca UK
Amer Haider –
Principal, GeneEquity
Dr Gemma Chandratillake –
Chair, Cambridge Rare Disease Network; Education and Training Lead, NHS East Genomics
Dr Huma Cheema –
Consultant Paediatric Gastroenterology-Hepatology, Children Hospital & Institute of Child Health, Lahore
Dr Ron Jortner –
Trustee, Cambridge Rare Disease Network and Founder & CEO, Masthead Biosciences
Kerry Leeson-Beevers
National Development Manager, Alstrom Syndrome UK; Project Lead, Breaking Down Barriers UK
Dr JAWAD GILL –
Head of Clinical Operations at DRK Pharma Solutions
Dr Sarah Bowdin –
Medical Director of the East Genomic Laboratory Hub
Dr Ammar Masood –
Lead operations South, DRK Pharma Solutions
Charles Steward –
Patient Advocacy and Engagement Lead, Congenica
Dr Madhu Madhusudhan –
Senior Business Manager, LifeArc
Alix Hall –
Managing Director, The Isaac Foundation, Canada
Allison Watson –
CEO, Ring20 Research and Support UK CIO
Alastair Kent –
Chair of Congenica’s Patient Advocacy and Engagement Advisory Board
Jo Balfour –
Managing Director, Cambridge Rare Disease Network (CamRARE)
Julia Hawkins –
General Partner, LocalGlobe & Trustee, Shwachman Diamond Syndrome UK
Louise Jopling –
Commercial Director, Eastern Academic Health Science Network [EAHSN]
Kevin Mott –
Member, Board of Directors, NephCure Kidney International
Farah Akhtar –
Rare mum & member of the xeroderma pigmentosum community
Liam Holohan –
Founder, DSST & creator of the noink platform
Dr Keith Tsui –
CEO & Co-founder, Medwise.ai
Shainoor Khoja –
Founder & CEO, Thriving.ai
John Lee Taggart –
Communications & Campaigns Manager, Niemann-Pick UK
Tony Boyle –
Chief Strategy Officer, Sundown Solutions
Heath Groves –
Founder & CEO, Sundown Solutions
DR Bruce Bloom –
Chief Collaboration Officer, Healx
Jennifer Wilson –
Head of Patient Advocacy and Public Affairs, Europe, Travere Therapeutics Ltd
Zan Virtnik –
UK Market Lead, Parsek
TAMMY BOYD –
Director of Health Policy and Legislative Affairs, Black Women’s Imperative