AHDS-MCT8 Patient Organization is the first patient organization to represent patients affected by Allan-Herndon-Dydley syndrome. The small AHDS community, with the invaluable support of the Sherman Foundation, managed to create this organization aimed at rising interest within the research community in the hope of finding a cure, offering support to patients and their families and lat but not least, rising awareness about this syndrome. AHDS is an extremely rare genetic syndrome that only affects boys. It has no cure and no treatment even though it has been originally described for the first time in 1944. It involves severe intellectual and motor delay.
Type of Project/Purpose: Press release to announce AHDS-MCT8 as the first patient organization for people affected by Allan-Herndon-Dudley syndrome.
Primary Contact Name: Veronica Popa
Contact Person Email: Forthcoming: firstname.lastname@example.org
# of Hours: 4