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Last Reviewed 23/07/2018


September 25, 2018 @ 11:00 am - 6:00 pm


Amnesty International Human Rights Action Center
25 New Inn Yard
London, EC2A 3EA
Register here

Event Enquiry Form

Genetic Alliance UK Annual Conference and Annual General Meeting will be held on 25 September. This conference will include two keynote sessions, talks by patient organisations, our annual general meeting, workshops and a panel discussion. The two keynote sessions will focus on the implementation of genomics in the NHS and what it means for patients affected by rare and genetic conditions and the effect of living with a rare disease on patients and carers’ mental health.

Speakers will include:

– Professor Sue Hill, Chief Scientific Officer, NHS England
– Professor Jill Clayton-Smith, Consultant Clinical Geneticist, Honorary Professor in Medical Genetics, University of Manchester
– Amy Hunter, Director of Research, Genetic Alliance UK
– Rebecca Nunn, a patient living with a rare condition

This conference will also be an excellent opportunity to:

– network with a range of stakeholders working in rare and genetic conditions, including academics, patients, patient organisations, clinicians, and other industry representatives;
– share information, celebrate and learn from the success of our patient groups;
– develop your skills by attending a series of practical and actionable workshops with accompanying take-home resources;
– discuss the challenges that affect your organisation in an open and supportive environment;
– showcase your organisation by displaying materials and information about your work.

Annual General Meeting (AGM)

Our AGM will be held during lunchtime, starting at 1:30 PM. To attend, please register for this event. We will be holding a vote to amend our governing documents. To ensure that we are operating a ‘one member one vote policy’ you will be asked to indicate the name of your organisation’s voting representative when registering.


We will facilitate a series of practical and actionable workshops with accompanying take-home resources. These workshops are likely to focus on:

– Building a strong case for support
– Do you need a patient registry?
– Working with the media
– Producing patient leaflets and information
– Managing online communities

Keep an eye out for our newsletter for a detailed plan and details on how to sign up.

Panel session

We will be hosting a Q&A with Genetic Alliance UK management team:

– Jayne Spink, CEO
– Nick Meade, Director of Policy
– Amy Hunter, Director of Research
– Emma Damian-Grint, Director of Fundraising and Communications
– Lauren Roberts, Director of Support

If you have questions that you would like us to answer, please submit them when registering.

Travel expenses

We are working to secure funds to enable volunteer-led patient organisations, patients and carers to attend our Annual Conference. Keep an eye out for our newsletters to hear more.

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