AE LALD is composed of LAL-D patients and their family members and friends. It was born out of the need to organise and join efforts due to the small number of diagnosed cases based on the possible prevalence.
This association aims to:
a) Assist, gather and counsel those affected by the disease, their families, friends and any other interested person (personally or professionally).
b) Manage and help get treatments for this disease.
c) Raise awareness about the disease in the various sectors that could be involved in the diagnosis and research of lysosomal diseases.
d) Support, promote and encourage research about this disease and/or lysosomal diseases.
e) Obtain guidance and support from medical, psychological, social professionals, and many others.
f) Obtain awareness from the general population and national and international organisations and institutions.
g) The association can join or collaborate with other associations and federations (national and/or international) focused on this pathology or similar ones. Moreover, it can also join rare disease organisations, given the disease’s low prevalence.