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This year’s conference is all about our members: sharing success stories and promoting networking and collaboration among members. After our Annual General Meeting, we will have keynote speakers, workshops and an interactive session.

As always, the conference will be an excellent opportunity to:

  • network with people from other patient organisations;
  • celebrate and learn from the success of our patient groups;
  • tell us how we can improve your experience as a member;

If you are a member of Genetic Alliance UK, the conference will be free to attend, but you do need to register on Eventbrite. The conference is also open to non-members, researchers, clinicians and industry representatives. If you are a patient organisation and not yet one of our members, you can are welcome to attend. You can also find more about joining as a member here.

Draft agenda:

10:30 AM – Registration and refreshments

11:00 AM – Genetic Alliance UK Annual General Meeting

11:30 AM – Welcome: Highlights and plans for next year

12:00 PM – Brexit: Implications for small and local charities and community groups – Pauline Broomhead CBE, Foundation for Social Improvement

12:30 PM – Lunch and networking session

1:30 PM – Parallel workshop sessions:

1. Using social media to engage your community: 

Hosting a digital debate

James Shaddock, Cystic Fibrosis Trust

Raising awareness: my metabolic hero campaign

Joanne Taylor, Climb

2. Fundraising:

Maximising fundraising for a rare disease charity

Daniel Lewi, The CATS Foundation

FragileXpedition: raising funds and awareness

Becky Hardiman, The Fragile X Society

3. Supporting and developing specialised clinics:

Supporting the Ehlers-Danlos diagnostic service

Jared Griffin, Annabelle’s Challenge

Maintaining key porphyria clinical expertise

Liz Gill, The British Porphyria Association

4. Providing support for your community:

Breaking down Barriers: providing supportive and inclusive services

Kerry Leeson-Beevers, Alström Syndrome UK

Promoting genetic awareness

Anne Edington and Wahida Pervaiz, East Lancashire Community Genetics Team

3:00 PM – Refreshments and networking session

3:30 PM – Interactive session: Being a member of Genetic Alliance UK

4:00 PM – Newborn screening and access to novel therapies – Prof Bobby Gaspar – Head of Rare Diseases Theme, Head of Molecular and Cellular Immunology Section, Professor of Paediatrics and Immunology. UCL Great Ormond Street Institute of Child Health.


Our AGM will be held at the beginning of the conference, starting at 11 AM. To attend, please register for the conference above.


We are seeking to appoint up to five new trustees, including a Chair, Deputy Chair and Treasurer during our AGM. You can find out more about what it means to be a trustee or nominate someone to be a trustee here.

If you have any questions about our annual conference, please contact Mariana Camposcreate new email.

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