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.
|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|