Ana Beojardín Jarel
A Coruña, Spanien
Teaming-Manager von 1 Gruppen
Spendet jeden Monat: 1 £ für 1 Gruppen
Seit 18-07-2017 gespendet: 86 £
Teaming-Manager in folgenden Gruppen
5.548 € Gespendet
50 Teamer
Teaming-Manager seit: 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/