Patient Webinars
Citizen Patient Registry Informational WEbinar
Tuesday, January 20, 2026
8:00 p.m. EST
Join us for a brief session to learn about the Citizen Patient Registry and why it is so important for individuals with CFC syndrome to be registered.
A patient registry is a secure database that collects medical information from people with the same condition. Registries help drive research, improve understanding, and support better care for rare disorders like CFC.
CFC International has partnered with Citizen to ensure all patient data is stored in one safe, centralized place. Citizen’s mission—People helping people—reflects their commitment to using shared experiences to support families facing rare and complex conditions. They envision a future where every patient has quick access to personalized guidance at every stage of their journey.
By registering, CFC patients contribute to stronger research, better resources, and a more informed community. Join us to learn how the registry works and why your participation matters.
Speech, Language and Feeding Skills in Children with CFC
Tuesday, January 27, 2026
8:00 p.m. EST
Join us for an informative session with Speech and Language Pathologist, Heather Thompson, PHD, CCC-SLP!
This talk will provide information to parents and families about speech, language and feeding skills and challenges in these areas for children with CFC. Developmental milestones for typically developing children will be reviewed, as well as the profile expected for children with rasopathies. Options for addressing speech, language and feeding concerns will be provided.
Growth in CFC Syndrome
Tuesday, February 24, 2026
8:00 p.m. EST
Bradley S. Miller, MD, PhD is a Professor in the Department of Pediatrics at the University of Minnesota Medical School, where he serves as Division Director of Pediatric Endocrinology. He is also the Medical Director of the Discovery and Voyager Clinics at M Health Fairview Masonic Children’s Hospital. Dr. Miller’s work focuses on advancing clinical care, research, and education in pediatric endocrinology. Dr. Miller is also a valued member of the CFC International Medical Advisory Board!
Join us and learn about growth in CFC syndrome. Dr. Miller will describe common challenges related to growth within the diagnosis, and will answer your questions in a Q & A session following his presentation!
New Parent Orientation
Saturday, March 7, 2026
10:00 a.m. EST
Are you a parent or caregiver looking to learn more about CFC syndrome and the valuable resources available through CFC International? Join us for an informative and supportive session designed to connect you with the knowledge, tools and community you need. Join Tuesdi Dyer, CFRE, Executive Director, Pilar Magoulas, MS, CGC, and Ashley Genelin, Ed.S., Program Manager, to learn about CFC International, our Family Support Network and receive a genetic overview of CFC Syndrome. This is an opportunity to become initially acquainted with CFC International for new families, as well as an opportunity for returning members to reacquaint themselves with the comprehensive offerings of CFC International.
REGISTER TO ATTEND
All webinars are virtual and are free for CFC families to attend. After CFC International receives your registration, they will send the Zoom link for the webinar. For questions contact info@cfcsyndrome.org. See you there!