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.
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
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.
ANNUAL GENERAL MEETING (AGM)
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.