We undertake campaigns to improve the quality of, and access to, treatments for leukodystrophy. Where possible we provide opportunities for our community to be involved and support our campaigns. Our projects help to develop new resources for our community. We have a steering group who are involved in the development of various projects within the charity.
We have developed a database of research summaries that include leukodystrophy articles, clinical trials and pharmaceutical press releases to allow our community to easily read about relevant recent research developments. Our research summaries are produced voluntarily by Biomedical Science students and reviewed by our Research Analyst.
We are the recognised voice for leukodystrophy patients in the UK – pharmaceutical companies often request our assistance in the development of, and recruitment for, clinical trials. We aim to ensure that research influences evidence-based policy, campaigns, service and resource development and communication to the benefit of people affected by leukodystrophy.
