Ana Beojardín Jarel
A Coruña, Espanha
Teaming Manager de 1 Grupos
Contribui mensalmente: 1 £ para 1 Grupos/projetos sociais
Desde 18-07-2017 contribuiu 86 £
Grupos de que é líder
5 548 € Arrecadados
50 Teamers
Teaming Manager desde: 18/07/2017
The CDKL5 Association is an NGO for patients with CDKL5 Deficiency Disorder, a genetic disease that causes epileptic encephalopathy and developmental delay with severe motor and cognitive impairment (including absence of speech, inability to walk, respiratory and muscle problems, etc.) It still has no cure, and currently, its treatment focuses on relieving the symptoms, mainly epilepsy. Scientists are investigating advanced therapies to modify the course of the disease. https://aacdkl5.org/