RASopathies Network Riders

RASopathies are a group of genetic syndromes that may be as common as 1:1000. The syndromes RASopathies Network focuses on include: cardio-facio-cutaneous (CFC), Costello (CS), LEOPARD/NSML, Neurofibromatosis type 1 (NF1), and Noonan (NS).

Our mission is to advance research to improve the quality of life for RASopathy families by bringing together families, clinicians and scientists.

RASopathiesNet is the product of RASopathies Network USA, a 501c3 Non-Profit, and the RASopathies Network UK.

Our goal is to grow a community of practice around RASopathies research. This includes:

Ensuring all diverse stakeholders are represented, heard and included

Raising Awareness of the RASopathies

Connecting and fostering collaboration among those affected and those researching and treating RASopathies through such mechanisms as:

Convening biennial symposia to bring families, clinicians and researchers together

Developing a discussion forum for professionals to foster collaborative research efforts

Providing user-friendly information resource to support families diagnosed with a RASopathy

Maintaining a contact list to facilitate natural history studies, to share information and research on these RASopathies

Fundraising for research to benefit RASopathies syndromes