GLIA Advocacy Workshop and Scientific Meeting 2022
The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is a consortium of scientists, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies.
Our Research Summary for December is now ready to review.
Our Research Summary for November is now ready to review.
Summary Report Available to View
Our study involved both a survey and individual interviews to capture attitudes and opinions about whether ALD should be included as part of the newborn screening programme.
Calling on all young carers and young adult carers to take a survey about pressures of their caring role
Carers Trust has launched a survey to find out about the pressures and challenges facing young carers aged up to 25, and what support they need.
Help support Young People Volunteering in Research
D-CYPHR is a community of young volunteers aged 11-15 helping to improve children’s physical and mental health through medical research. By donating saliva samples and answering questionnaires, the DNA library they are building helps researchers de-code the links between genes, the environment, health and disease. They are dedicated to the improvement of physical and mental health in children and young people and to reduce the risk and impact of chronic illness.