Asociación de Síndrome Miastónico Congénito

English - Español
Contact with us:
Phone: +34 699 66 44 84 asmic@asmic.es

Association

The “Congenital Myasthenic Syndrome Association” (ASMIC by its Spanish acronym), is created as a non-profit and apolitical organization for an undefined period of time. Given the “rare disease” status of the congenital myasthenic syndrome, the main goal of ASMIC is to foster knowledge and communication about the disease, with the intention of reaching all non-diagnosed affected people so that they can be treated adequately while facilitating exchanges among concerned individuals. We are convinced that through these exchanges everybody will benefit from shared experiences.

Actions


Developing all kind of actions aimed at improving the quality of life of CMS patients and their relatives, trying to ensure by all means that patients can develop their lives within society from a position of equal opportunity.

 Informing and raising awareness within both society and public institutions in order to guarantee the integration of this collective in all areas of life.



Helping the opening of new research lines or the progress of existing ones, with the object of finding new drugs that may make the condition more liveable and making the most of new genetic therapies.

Becoming a meeting point for all affected people and their families, constituting a hub for debating all aspects of the disease and more especially, exchanging knowledge about any breakthrough medical advances.

Activities

Communication and divulgation:


Creating an alliance with the rest of kindred organizations on a Spanish, European and worldwide scale.

Organising all type of activities brought up by the members and with the approval of the General Assembly, that could maintain and boost the life of the association. Sections could be created, if need be, where members may collaborate at will, always aiming at an open implication of all associates.

Board of Regents:

Rogelio Lozano (President)
Pau Segarra (Vice-president)
Fernando Lozano (Treasurer)
Ignacio Escuder (Secretary)