Digital Community Weekend gives leukodystrophy sufferers chance to question experts
15 Dec 2021
Alex, The Leukodystrophy Charity (TLC), held their Digital Community Weekend last month. The weekend aims to bring 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.
The weekend included two wide-ranging Q&A sessions covering topics including the NHSE Inherited White Matter Disorders (IWMD) Registry and Service, transitioning to adult services, and updates on current research and clinical trials. A summary of these sessions is available.
Alex TLC is an approved Patient Support Group of the Society for Endocrinology. The Society is committed to supporting groups that represent patients with endocrine conditions by facilitating dialogue with the medical community.