An online family update event took place on Wednesday 12th January 2022 at 4pm.
Our event compere, Dee Davison is organising for the recording to be subtitled and a link will be posted here once this has been completed.
If you attended our event please answer the evaluation questions and email [email protected] your response.
| Event Evaluation |
|---|
| 1. Did this event meet your expectations? |
| 2. What did you like most? |
| 3. What did you like least? |
| 4. What could we do better? |
We are hoping to plan an in person Family day towards the summer if COVID restrictions allow.
Event Programme Details
| 16:00 – 16:02 | Welcome: Event Host Professor Yanick Crow |
| 16:02– 16:07 | Event Compere: Dee Davison, Public Engagement Manager, Institute of Genetics and Cancer, University of Edinburgh Welcome & Introductions: Professor Yanick Crow, Clinical Geneticist and ResearcherDr Eslam Al-Abadi, Consultant Paediatric Rheumatologist and ResearcherTina Nesbitt, Founder of the AGS UK Patient Organisation |
| 16:07 – 16:30 | Professor Yanick Crow, MRC Human Genetics Unit, Institute of Genetics and Cancer, University of Edinburgh Overview of AGSUpdate on AGS8/9Update on RTI clinical trial |
| 16:30– 16:40 | Dr Eslam Al-Abadi, Birmingham Women’s and Children’s Hospital Update on JAK inhibition in AGS |
| 16:40 – 16:50 | Tina Nesbitt, AGS UK Patient Organisation Inherited White Matter Disorder Centres & Registry |
| 16:50 – 17:30 | Discussion & Q&A with participating families |