Libby Clegg

Paralympic, World, European and Commonwealth champion sprinter

Keynote dinner speech

Nisha Tailor

Head of Policy & Public Affairs 
Association of Medical Research Charities

How will Brexit impact on UK medical research and patients with genetic disorders?

Nisha Tailor explains how medical research and patients with genetic disorders in the UK could be affected by Brexit, and the work underway to achieve the best possible outcomes for all.

Lisa Jamieson

Research Fellow 
The Wingate Institute for Neurogastroenterology and The Royal London Hospital

The importance of patience and gentle persistence

Lisa Jamieson talks about how a sudden illness led to her discovering a new way of managing the symptoms of hypermobile Ehlers Danlos syndrome.

Claire Hennessey

Development Officer 
Max Appeal

Managing health professionals’ engagement with a complex syndrome

Claire Hennessey discusses how Max Appeal has used a consensus document to engage medical professionals and initiate other important projects to raise awareness of 22q11 deletion syndrome.

Dr Julie Vallortigara

Research Officer 
Ataxia UK

Keeping disorder-specific medical guidelines up to date and preparing training days for healthcare professionals

Dr Julie Vallortigara explains the process Ataxia UK is using to update its medical guidelines, and how the charity engages with medical professionals through the organisation of training days.

Patricia Osborne

CEO 
Brittle Bone Society

Charting the Brittle Bone Society’s own course in research

Patricia Osborne gives an overview of the journey the Brittle Bone Society has been on to host its first scientific symposium in February 2017.

David Hartley

Chairman & Co-Founder 
The XLP Research Trust

Medical research symposia: An investment that pays back again and again

David Hartley explains how The XLP Research Trust has developed a bi-annual global medical research symposium that draws in researchers from across the world.

Natalie Douglas

CEO 
Healthcare at Home

Care in the place you most want to be

Natalie Douglas talks about the work of Healthcare at Home and its ambition to support families affected by genetic disorders by providing vital medical support outside of hospital.

Sam Carlisle and Sally Land

Co-Founders 
Cause Communications

How to prepare and get the most out of your PR

Sam Carlisle and Sally Land talk about ways a genetic disorder charity might approach PR, how to manage media relationships and what to do in a crisis.

Rebecca Stewart

Co-Founder 
Rare Revolution Magazine

Giving a voice to patients affected by genetic disorders and the charities that support them

Rebecca Stewart discusses her hopes and ambitions for a Rare Revolution with the launch of a new online magazine.


Margarita Sweeney-Baird

Founder 
Inclusive Skating

Inclusive Skating: A novel approach to the development of sporting opportunities for those with genetic disorders

Margarita Sweeney-Baird talks about creating the first Inclusive Skating for Genes British Championships and why we need an Inclusive Sport for Genes development programme.

Rachael Robinson

Marketing and Communications Officer
Over the Wall

A serious fun camp for children with life-limiting illnesses and their families

Rachael Robinson presents the Over the Wall residential camps that allow children to reach beyond the perceived limitations of their illness in a physically safe and medically sound environment.

Virginia Govoni

Partnerships Manager 
Centre for Population Genomic Medicine

The Centre for Population Genomic Medicine

Virginia Govoni introduces the Centre for Population Genomic Medicine and explains how the East London Genes & Health project will contribute to the development of new therapies for patients with genetic disorders.

Michaela Damin

Founder and Chair 
Barth Syndrome Trust

Punching above our weight: How extremely rare disease patient groups can plan for success

Michaela Damin talks about some of the steps her charity has taken to plan for long-term success and how she is leveraging resources to achieve results.

Professor Emma Morris

University College London 
University College London Hospital and the Royal Free Hospital, London

The evolution and future of bone marrow transplantation

Professor Emma Morris talks about how bone marrow transplantation has improved over the years and its role in treating and curing genetic disorders.

Ben Nunn

Associate Director
Specialised Healthcare Alliance

Redefining the affordable

Ben Nunn outlines the implications of NHS England and NICE’s proposed changes to the way treatments are appraised and funded on the NHS.

Derek Hill

Head of Growth Partnerships 
Just Giving

Reach more supporters and raise more online, whatever your cause may be

Derek Hill shares insights into how charities and patient groups can use the JustGiving platform and tools to grow income, whilst leveraging the networks and crowdfunding potential of givers and advocates closest to your cause.

Kay Parkinson

Founder & Director 
Alstrom Syndrome Europe

A parent’s journey

Kay Parkinson talks about how rare diseases have changed her life.