Ana Beojardín Jarel

A Coruña, Espanya


Teaming Manager de 1 Grups

Cada mes aporta 1 € a 1 Grups

Des del 18-07-2017 ha aportat 88 €

Grups que lidera

1

5.644 € Recaptats

49 Teamers

Teaming Manager des de:  18/07/2017

Asociación de afectados CDKL5

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/