Who we are

IMPULSAT is the official spanish non-profit association representing people having Congenital Merosin-deficient Muscular Dystrophy (LAMA2-CMD1A). It is a rare disease that affects 1 in 100.0000 people with unknown cure. 

We are a non-profit association of relatives, doctors, scientists and friends of people affected by this disease. Thanks to our members, philanthropists, business and institutions, we continue the work  on the areas below:

PROMOTING AND CONTRIBUTING
MEDICAL RESEARCH PROJECTS

Through the fundraising we promote and maintain medical research lines in order to improve the treatment and cure of DMC1A-LAMA2. Currently these research lines are taking place at the Research Institute in la Vall d’Hebron Hospital and at Pompeu Fabra University both in Barcelona, Spain.

Through the ImpulsaT scientific committee we also work on connecting research teams in order to encourage them to collaborate and make progress on the research of this illness.

CREATING A SPANISH NATIONAL
PATIENT REGISTRY

We promote the communication and collaboration among people suffering from this disease and the various national and international organisms to accelerate research, treatment and increase the knowledge about the disease. 

We have also created the national register of people who suffer from Congenital Merosin-deficient Muscular Dystrophy (LAMA2-CMD1A) with an international registration form model which facilitates the compilation of medical information and enables further clinical research. 

RAISE AWARENESS 

We organize scientific and medical symposiums, family meetings, community events. We also create and distribute content to educate people about Congenital Merosin-deficient Muscular Dystrophy (LAMA2-CMD1A) and make them aware of  the consequences of this illness.