Ana Beojardín Jarel

A Coruña, Spain


Teaming Manager in 1 Groups

Contributes every month: £1 to 1 Groups

Since 18-07-2017 has contributed £86

Groups led

1

€5,548 Raised

50 Teamers

Teaming Manager since:   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/