Who are we

We are an alliance of European patient associations representing those affected by LAMA2-Congenital Muscular Dystrophy (LAMA2-CMD), also known as Merosin-Deficient Muscular Dystrophy (MDC1A).

An overview of the different partners and collaborators involved in driving this initiative forward can be found below.

Our Mission

Our mission is to further advance awareness and research for LAMA2-CMD internationally and to directly support patients and families by providing relevant information and resources.

By including the patients and families, and by collaborating with the clinicians, researchers and members of the biotech industry involved with LAMA2-CMD around the world, we aim to accelerate the road to therapy in a truly united and collective global effort.

Our Objectives

Together, we are dedicated towards achieving the following goals:

RAISING AWARENESS on LAMA2-CMD and advocating for more support for this disease.
Accelerating the path to CLINICAL STUDIES AND TRIALS and supporting SCIENTIFIC RESEARCH by promoting communication and collaboration internationally.
Creating a European PATIENT REGISTRY and supporting the interoperability between NATIONAL REGISTRIES to facilitate patient identification and recruitment for clinical trials and to strengthen European attractiveness for clinical trials.
Providing accurate information and EDUCATION to the LAMA2-CMD community.
Providing SUPPORT and maintaining active networks allowing patients, their families and the scientific community to connect and share, including with countries not yet organised with dedicated patients associations in Europe.

If you have any questions we encourage you to contact us here, or by using the contact form below.

LAMA2.com was initiated by the Voor Sara Foundation in 2019. The Voor Sara Foundation was founded in late 2016 by the parents of a girl named Sara, who lives with LAMA2-CMD. The aim of the foundation is to bring leading medical researchers and doctors together to lead the important steps towards finding a cure for MDC1A. The Voor Sara foundation has been working together with the Spanish based ImpulsaT foundation and the French based LAMA2 France foundation since 2021.