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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.

Richard Scott

Dr Richard Scott – 

Chief Medical Officer, Genomics England

Naomi Litchfield

Naomi Litchfield –

Global Patient Advocacy Lead, Bionical EMAS

Tim ringrose

Dr Tim Ringrose –

CEO & Co-Founder, Cognitant Group

Emma Sutcliffe

Emma Sutcliffe –

SVP, Patient Insights & Solutions, Prime Global 

Christine MacCracken crop

Christine MacCracken

Head, Patient Strategies & Solutions, Janssen Pharmaceutical Companies
of Johnson and Johnson

Daniel Lewi

Daniel Lewi –

Head of Business Development and Patient Advocacy, Pulse Infoframe,  Co-Founder, Cure & Action for Taysachs Foundation

Cambridge Rare Disease Network - RAREsummit21 | Speakers 1

Rebecca Middleton –

Vice Chair, Participant Panel at Genomics England, Founder & Director Hereditary Brain Aneurysm Support

Dr Harvey Lodish

Dr Harvey Lodish – 

Founding Member, Whitehead Institute for Biomedical Research; Professor of Biology & Biological Engineering, MIT

Steve Rees

Steve Rees –

CEO, VP Discovery Biology, AstraZeneca

Femida Gwadry Sridhar

Dr Femida Gwadry-Sridhar –

CEO, Pulse Infoframe

Tim Guilliams

Dr Tim Guilliams –

Trustee, CamRARE and Co-founder & CEO, Healx

Shirlene Badger

Shirlene Badger –

Patient Advocacy Specialist, Illumina

Kath Bainbridge

Dr Kath Bainbridge –

Head of Genomics Science and Emerging Technologies, Department for Health and Social Care

Sharon barr

Sharon Barr –

Senior VP, Head of Rare Disease Research & Product Development, Alexion AstraZeneca

Salman kirmani

Dr Salman Kirmani –

Chair Division of Women & Child Health, Aga Khan University, Karachi


Lauren Watson

Lauren Watson –

Rare Diseases Lead, Genomics Science and Emerging Technologies, Department of Health and Social Care

Sasha Henriques

Sasha Henriques –

Principal Genetic Counsellor, Guy’s & St Thomas’ NHS Trust

Alex Lloyd

Alex Lloyd –

Principal Advisor – Commercial Delivery Lead, Eastern AHSN

Sophie Muir

Sophie Muir –

Chair of Trustees, Timothy Syndrome Alliance (TSA)

Jess Duggan

Jess Duggan –

Patient Advocate & Volunteer, SynGAP Research Fund

Abdur Rasheed

Dr Abdur Rasheed –

Director Division of Pharmacy, Services, Drug Regulatory Authority of Pakistan (DRAP)

Nicola miller

Nicola Miller –

Editor In Chief, Rare Revolution Magazine, Chair of Trustees, Teddington Trust

Sean Richardson

Sean Richardson –

General Manager, Alexion Astra Zeneca UK

Amer Haider

Amer Haider –

Principal, GeneEquity


Gemma Chandratillake headshot

Dr Gemma Chandratillake –

Chair, Cambridge Rare Disease Network; Education and Training Lead, NHS East Genomics

Huma Cheema

Dr Huma Cheema –

Consultant Paediatric Gastroenterology-Hepatology, Children Hospital & Institute of Child Health, Lahore

Ron Jortner

Dr Ron Jortner –

Trustee, Cambridge Rare Disease Network and Founder & CEO, Masthead Biosciences


Kerry Leeson Beevers

Kerry Leeson-Beevers

National Development Manager, Alstrom Syndrome UK; Project Lead, Breaking Down Barriers UK

Dr Gill Jawad DRK


Head of Clinical Operations at DRK Pharma Solutions 

Sarah Bowdin

Dr Sarah Bowdin –

Medical Director of the East Genomic Laboratory Hub

Ammar Massoud

Dr Ammar Masood –

Lead operations South, DRK Pharma Solutions

Charles Steward

Charles Steward –

Patient Advocacy and Engagement Lead, Congenica

Madhu madhusudan

Dr Madhu Madhusudhan –

Senior Business Manager, LifeArc

Alix Hall

Alix Hall –

Managing Director, The Isaac Foundation, Canada

Allison Watson

Allison Watson –

CEO, Ring20 Research and Support UK CIO

Alistair Kent

Alastair Kent –

Chair of Congenica’s Patient Advocacy and Engagement Advisory Board

Jo Balfour CamRARE Managing Director - profile pic

Jo Balfour –

Managing Director, Cambridge Rare Disease Network (CamRARE)

Julia Hawkins

Julia Hawkins –

General Partner, LocalGlobe & Trustee, Shwachman Diamond Syndrome UK

Louise Jopling

Louise Jopling –

Commercial Director, Eastern Academic Health Science Network [EAHSN]

Kevin Mott

Kevin Mott –

Member, Board of Directors, NephCure Kidney International

Farah Akhtar

Farah Akhtar –

Rare mum & member of the xeroderma pigmentosum community

Liam Holohan

Liam Holohan –

Founder, DSST & creator of the noink platform

Keith Tsui

Dr Keith Tsui –

CEO & Co-founder, Medwise.ai

Shainoor Khoja

Shainoor Khoja –

Founder & CEO, Thriving.ai

John Lee Taggart

John Lee Taggart –

Communications & Campaigns Manager, Niemann-Pick UK

Cambridge Rare Disease Network - RAREsummit21 | Speakers 2

Tony Boyle –

Chief Strategy Officer, Sundown Solutions

Cambridge Rare Disease Network - RAREsummit21 | Speakers 3

Heath Groves –

Founder & CEO, Sundown Solutions

Bruce Bloom

DR Bruce Bloom –

Chief Collaboration Officer, Healx

Jennifer Wilson

Jennifer Wilson –

Head of Patient Advocacy and Public Affairs, Europe, Travere Therapeutics Ltd

Zan Virtnik

Zan Virtnik – 

UK Market Lead, Parsek

Cambridge Rare Disease Network - RAREsummit21 | Speakers 4


Director of Health Policy and Legislative Affairs, Black Women’s Imperative