The Covid-19 pandemic has impacted many charities and rare disease patient groups, reducing their ability to raise much needed funds, but positive initiatives have also emerged from the lockdown. Given the financial and geographical obstacles imposed by the virus, five international Ataxia Telangiectasia (A-T) organisations have staged virtual meetings to explore collaborating at an international level.
As a result of this collaboration, www.cureat.org has emerged, the first international directory for Ataxia Telangiectasia. A-T is a rare, genetic, and neurodegenerative disease that causes progressive disability, immunodeficiency, respiratory problems, speech difficulties and an increased risk of cancer, among other complications. People with the condition are fully aware of their illness, as it does not affect their mental faculties.
Along with the A-T Society, BrAshA-T, Aefat and the A-T Children’s Project, Action for A-T lead this A-T Global Alliance from which the directory has emerged. The site was established to pull together key information about Ataxia Telangiectasia including information about the latest research projects, publications and clinical trials, patient care, support and registries, related meetings and conferences and various engagement opportunities. The platform also includes links to each of the known 20 associations that exist in different countries.
The A-T Global Alliance seeks to facilitate information on Ataxia Telangiectasia for researchers, health professionals, patients, and families, and to generate greater communication between the different groups. Their goal is to speed up the search for a cure, or at least treatments and therapies that minimise the effects of this degenerative disease and allow a better quality of life for those affected who are predominantly children and young people under 20 years of age.
The website will be launched on World Health Day (7th April) and expanded and updated over time.