Patient-based Registry

FEDERAS Federación Española Síndrome de Noonan y otras Rasopatías

Spanish Noonan Syndrome and other Rasopathies Federation (FEDERAS)

The Spanish Noonan Syndrome and other Rasopathies Federation (FEDERAS) is a non-profit organization formed by associations that work to defend the rights and interests of individuals affected by these syndromes. According to estimates by the international scientific community, in Spain, there could be from 34,000 to 65,000 affected individuals. With its origins in the Noonan associations in Spain, this movement arises from the concern of affected individuals and family members seeking support, knowledge, and the sharing of experiences with others in similar situations. The majority of these entities have been established since 2011 in different regions. It was established in 2015 with four member entities based in Asturias, Cantabria, Castilla-León, and the Valencian Community, subsequently joined by entities from Andalusia, Aragón, Catalonia, Madrid, Castilla La-Mancha, and the Murcia region.

The activity of FEDERAS is aimed at promoting a socio-sanitary context, as well as any other relevant context, suitable for improving the living conditions of individuals affected by Rasopathies, acting as a cohesive entity on behalf of the various federated entities.

Among its objectives, it works to promote coordinated advancement in the understanding of Rasopathies, as well as favorable conditions for equal access to resources for affected individuals, being a valid and reference interlocutor at the national level, enhancing research, facilitating the optimal legal framework to improve the quality of life for affected individuals and their families, promoting education, awareness, and dissemination, and actively collaborating with other entities in Spain or abroad whose mission is analogous to that of the Federation.

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Montse Botella