How to Advocate for Research? Webinar with Tuesdi Dyer from CFC International
Justyna Walczuk from MEK2 Research Foundation and Tuesdi Dyer from CFC International discuss research advocacy and the many ways families can help move science forward.
We connect families, researchers and clinicians. We search for scientific progress funding. We accelerate research towards drug development. We work for Maria and other kids with an ultra-rare disease caused by MEK2 mutations.
Justyna Walczuk from MEK2 Research Foundation and Tuesdi Dyer from CFC International discuss research advocacy and the many ways families can help move science forward.
Justyna Walczuk, founder of MEK2 Research Foundation, has completed the Open Academy x ERDERA School on Scientific Innovation and Translational Research — a programme organized by EURORDIS and ERDERA for rare disease patient organization leaders
A new social awareness campaign on rare diseases, initiated by the MEK2 Research Foundation, has officially launched. The campaign highlights a striking reality: rare diseases affect millions of people worldwide, yet only about 5% of
MEK2 Research Foundation supports individuals and families affected by rare RASopathies, including CFC syndrome. We help patients navigate reliable medical information and build meaningful connections with clinicians and researchers. By sharing their experiences, patients actively shape research priorities and contribute to the development of future therapies.
MEK2 Research Foundation is a research-centered organization focused on advancing studies in MAP2K2-related RASopathies. We enable clinical, biobanking, and translational research by connecting researchers with well-characterized patient cohorts. Our mission is to accelerate collaboration and therapy development through responsible, patient-informed data sharing.
If you or your child has been diagnosed with CFC type 4 (caused by a mutation in the MAP2K2 gene), we know how overwhelming the first steps can be. The MEK2 Research Foundation was created to support families like yours — with information, connection, and hope. You are not alone.
Does your child have another CFC mutation? Feel free to contact us as well. Children with MEK1, BRAF, and KRAS mutations deserve treatment too. We want to advocate for the entire CFC community – let’s do it together.
