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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.

Draft agenda

10:00 – Opening from Dr Jayne Spink, Genetic Alliance UK Chief Executive.

10:15 – Professor Dame Sue Hill, Chief Scientific Officer for England, speaking on the implementation of genomics in the NHS.

10:30 – Professor Jill Clayton-Smith, Consultant Clinical Geneticist and leader of the EU network for Rare Congenital Malformations and Intellectual Disability, speaking on the implementation of genomics, how it changes the role of clinicians and their relationships with patients.

10:45 – Discussion and Q&A

11:00 – The impact of living with rare diseases on mental health, Dr Amy Hunter and Rosa Spencer-Tansley, Genetic Alliance UK, present the findings from their research: Living with a rare condition: the effect on mental health. Followed by discussion and Q&A.

11:30 – Refreshments and networking

11:50 – Members’ session: current challenges and opportunities in the sector. Followed by discussion and Q&A.

  • Clare Dickson, ALD Life, speaking on monitoring and evaluation as a small charity
  • Jan Fowler, SOFT UK, speaking on designing and delivering training for healthcare professionals
  • Dr Aisling McMahon, Cystic Fibrosis Trust, speaking on increasing access to clinical trials

12:30 – Lunch / networking

13:00 – AGM

14:00 – Workshops (attendees able to join two sessions)

  1. Building a strong case for support
  2. Do you need a patient registry?
  3. Producing patient leaflets and information
  4. Managing online communities
  5. Genomics England, working with media

16:00 – Online attendees chance to ask questions / Break

16:20 – Panel discussion, senior management team of Genetic Alliance UK and speakers.

16:45 – Closing remarks, Dr Jayne Spink, Genetic Alliance UK Chief Executive.

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 1:00 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.


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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