Ana Beojardín Jarel

A Coruña, Espagne


Teaming Manager de 1 Groupes

Chaque mois il/elle apporte 1 € à 1 Groupes

Depuis le 18-07-2017 il/elle a donné 88 €

Groupes qu'il/elle dirige

1

5 644 € récoltés

49 Teamers

Teaming Manager depuis :  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/