The Alex TLC Digital Community Weekend brings together leukodystrophy sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.
Join us on the 20th – 21st November.
Join us on Saturday for insightful presentations and research updates. Get your questions answered by leading leukodystrophy specialists.
- NHS England Inherited White Matter Disorder Patient Registry
- Condition Specific Presentations
- Summary of NBS Professional Roundtable
- Q&A Sessions
- Chill Out Session
- Kids’ Activity
- Alex TLC kids’ book workshop
NHS England Inherited White Matter Disorder Patient Registry update by John Livingston
We are please to announce that Dr J Livingston will be joining us to give his NHS England IWMD Patient Registry update on Saturday 20th November.
Sunday will be our condition management day with sessions dedicated to:
- NHS England Inherited White Matter Disorder Service
- Continence – Children
- Genetic Counselling
- Expectations of Patient Care
- Alex TLC Support Services
- Gene Therapy and Bone Marrow Transplants
- Support for Severely Symptomatic Patients
- Mental Health & Mindfulness
- Physiotherapy & Wellbeing Activity
- Fundraising/Get Involved Workshop
- Kids Craft Activity
ALD Newborn Screening Professional Roundtable.
Join us on Saturday 20th Nov with Professor Colin Steward presenting his round up of our professional roundtable discussion on next steps for our ALD Newborn Screening Campaign.
- Moderator: Professor Colin Steward
- Dr Wolfgang Köhler
- Dr Florian Eichler
- Dr James Davidson
- Sara Hunt
- Dr Leila Cornes
- Dr Paul Orchard
- Dr Ali Fatemi
- Karen Harrison
- Dr Ann Moser
- Dr Amena Fine
- Dr Marc Engelen
- Elisa Seeger