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!
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SCHOLARSHIPS AVAILABLE!
Apply for a scholarship to attend a CFC International Event.
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Cincinnati Children's Hospital CFC Clinic & Family Meetup
CFC Day at the Cincinnati Children’s Hospital Rasopathy Clinic
April 16, 2026
Limited space for 10 CFC patients available. These appointment spots are guaranteed to CFC families ONLY. To make appointments, contact Liz at 1-513-636-5293. Call ASAP to ensure that your appointments are confirmed.
CFC Family Meetup will take place at the hotel and details will be available soon.
Hotel accommodations can be made by calling CCH Concierge Services:
512-636-5009 -
Boston Children's Hospital CFC Clinic in July
CFC Days at the Boston Children’s Hospital Rasopathy Clinic
July 16-17, 2026
To make appointments and coordinate care, contact genetic counselor, Libby Westrate at libby.westrate@cardio.chboston.org. Reach out ASAP to ensure that your appointments are confirmed.
CFC Family Meetup will take place at the hotel and details will be available closer to the dates of the clinic.
Hotel accommodations can be made at The Inn at Longwood Medical. Hotel offers reduced rate for all patients being seen at BCH. -
Pacific Northwest Family Meetup
Family Meetup will take place on Friday, August 14, 2026.
Group reservation rate of $139 per night available when you book through the CFC International block from 8/13/26-8/15/26. Rate is guaranteed when you book before July 31, 2026.Hilton Garden Inn
3528 Gateway Street
Springfield, Oregon 97477 -
Boston Children's Hospital CFC Clinic in October
A second opportunity to attend CFC Day at the Boston Children’s Hospital Rasopathy Clinic will be hosted on:
October 15-16, 2026
To make appointments and coordinate care, contact genetic counselor, Libby Westrate at libby.westrate@cardio.chboston.org. Reach out ASAP to ensure that your appointments are confirmed.
CFC Family Meetup will take place at the hotel and details will be available closer to the dates of the clinic.
Hotel accommodations can be made at The Inn at Longwood Medical. Hotel offers reduced rate for all patients being seen at BCH.
Highlights from Previous CFC Meetups and Events:
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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.
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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!
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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