In the Heart of the Journey, We Find Each Other — Bringing Families Affected by CFC syndrome Together to Share Strength, Stories, and Support.

Attend an upcoming event!

  • Rasopathies Network Scientific Symposium

    Please read before registering. You may attend the full symposium (July 25-27) OR only the CFC Family Meetup (July 27 from 12 p.m. - 3 p.m.).

    If you are attending the full symposium, you must register with the Rasopathy Network AND CFC International. The link to register with the Rasopathy Network is included in the CFC International registration form at the pink button below.

    The Symposium sessions are highly scientific and will be a presentation of research on issues in all Rasopathies, not only CFC syndrome. Children are not allowed in these sessions.

    If you are attending the July 27th CFC Family Meetup ONLY, you only need to register with CFC International at the form linked to the pink button below. You do not need to register with Rasopathy Network.

    The CFC Family Meetup will be a luncheon where members of our Medical Advisory Board will join our CFC families to discuss the science presented at the symposium. Families are welcome to enjoy time at the resort pool following the luncheon.

    📍 Where: Hyatt Regency Grand Cypress
    1 Grand Cypress Blvd, Orlando, FL 32836

    $199-219 + tax per night, depending on the occupancy and type of room selected

    For more hotel information, call: (407) 239-1234

    Click here to make your hotel reservation

    🗓️ When: July 25-27, 2025 for full Symposium

    July 27, 2025 CFC Family Meetup 12 p.m. - 3 p.m.

    🎡 What’s Happening:

    Scientific Symposium: July 25-27.

    Click here for the conference agenda

    CFC family gathering hosted by CFC International on Sunday, July 27

    *** Please note that the entire family is welcome at the CFC Family Meetup on July 27th. However, children are not allowed in the Symposium sessions and they will not be providing childcare.***

    SCHOLARSHIPS ARE AVAILABLE - SEE LINK AT THE BOTTOM OF THIS PAGE.

    CFC Meetup Registration with Symposium Registration Info

  • UK Costello/CFC Conference

    📍 Where: DoubleTree by Hilton Manchester Airport Hotel

    Queen Guest Room
    £135 per night 

    Queen Family Guestroom with Double Sofa Bed
    £145 per night

    Two Queen Beds Family Guest Room
    £165 per night

    All rooms  include a great Hilton buffet breakfast.  All other meals are provided including an evening meal on Wednesday evening as well as lunch and evening meal on Thursday.  A spooky Halloween party for the whole family will take place on Thursday evening.

    Click here to make your hotel reservation

    🗓️ When: October 29-31, 2025

    🎡 What’s Happening:

    Click here for the conference agenda

    REGISTER TO ATTEND THE UK COSTELLO/CFC CONFERENCE

  • Virginia Meetup

    📍 Where: Augustine Community Clubhouse
    in Stafford, Virginia

    For more information, email: info@cfcsyndrome.org

    🗓️ When: November 8, 2025

    🎡 What’s Happening:

    This annual CFC family gathering hosted by The Milner Family is a complete recipe for FUN! Join regional CFC families to meet Santa, enjoy the fire trucks, play games and so much more!

    More information to come as the event draws closer!

    REGISTER TO ATTEND THE VIRGINIA MEETUP

  • SCHOLARSHIPS AVAILABLE!

    Apply for a scholarship to attend a CFC International Event.

    Stephanie Kohler Scholarship Application

Highlights from Previous CFC Meetups and Events:

  • 2024 Family Medical Conference - Orlando, Florida

    Living as a family impacted by CFC syndrome can often feel isolating, regardless of your location. This conference provided a unique experience where families could discover community, support, and friendship. Attending the conference allowed for fellowship and opportunities to engage with other families and medical professionals.

    see conference photos

  • Cincinnati Children's Hospital CFC Clinic & Family Meetup

    The CFC syndrome Family Clinic at Cincinnati Children's Hospital's Rasopathy Clinic took place on March 20, 2025. We welcomed 20 families for two days of comprehensive clinic care from neurology and cardiology to gastroenterology and genetics. Following the clinic, families joined one another at the hotel for a pizza party!

    See photos from cincinnati

  • Morgan's Wonderland - San Antonio 2025

    In May 2025, CFC families from near and far came together for a joyful and unforgettable day at Morgan’s Wonderland in San Antonio, TX—the world’s first ultra-accessible theme park! From laughter-filled rides to meaningful conversations, this special gathering was a beautiful reminder of the power of connection, community, and celebration. Check out the photos to relive the fun and see the magic of CFC families coming together

    See Photos from Texas