MAKE A DIFFERENCE

Get Involved

You don't have to be a scientist or a doctor to make a difference for CSCF families. Every share, every connection, every voice raised in awareness matters. Here's how you can help.

Four Ways to Make a Difference

Every action — big or small — helps build a stronger community and a brighter future for CSCF families.

Spread the Word

Share CSCF Support

The single most powerful thing you can do is share this website with anyone who might benefit — families, doctors, teachers, or friends. The more people who know about CSCF, the faster families find answers.

  • Post about CSCF on your social media
  • Share this site with your child's medical team
  • Tell other rare disease families about this community
Connect with Families

Join the Community

Whether you are a parent, patient, caregiver, or supporter — there is a place for you in the CSCF community. Join our private Facebook group, sign up for updates, or share your story.

  • Join our private Facebook group for families
  • Sign up for research and community updates
  • Share your diagnosis journey to help others
Raise Your Voice

Participate in Awareness

Rare Disease Day is February 28th each year. But awareness for CSCF can happen any day. Wearing a ribbon, posting on social media, or speaking to your local school or hospital can all make a real impact.

  • Participate in Rare Disease Day (Feb 28)
  • Share CSCF facts on social media
  • Talk to your child's school about rare disease awareness
Advance the Science

Support Research

Research is the path to better treatments and, ultimately, a cure. You can support research by connecting with researchers, participating in studies, or helping us build a global patient registry.

  • Connect us with researchers or clinicians you know
  • Participate in natural history studies when available
  • Help build the global CSCF patient registry
< 30
Confirmed cases worldwide
6+
Countries with known cases
7+
Published case studies
2016
Year gene was identified
TOGETHER WE ARE STRONGER

Every action you take matters.

CSCF is so rare that awareness itself is a form of research. When more people know this condition exists, more families get diagnosed faster, more clinicians take interest, and more researchers ask questions. You are part of that chain.

Share this site with one person today
Join the community and connect with families
Reach out if you are a researcher or clinician