Children's Craniofacial Association
Children’s Craniofacial Association (CCA Kids), a national nonprofit headquartered in Dallas and founded in 1989, worked for over 27 years toward the vision of a world where all people are accepted for who they are, not how they look.
Each year approximately 50,000 children in the United States are born with or develop some form of facial difference (previously called disfigurements). In many cases, reconstructive surgeons can correct these problems early—often while the children are still infants. In other cases, however, reconstruction is not so easy or even possible. To assist these families, CCA offers programs and services including Patient Financial Assistance, the Annual Family Retreat & Educational Symposium, and kindness education and bullying prevention programs in middle schools across the country.
About Our Organization: Children’s Craniofacial Association, a 501(c)(3) nonprofit organization based in Dallas, Texas and founded in 1989, serves over 20,000 families per year. CCA’s mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look. Learn more about at http://www.ccakids.org.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
- Antley-Bixler Syndrome
- Apert syndrome
- Carpenter Syndrome
- Cleft Lip and/or Palate
- Coffin-Lowry syndrome
- Craniosynostosis
- Crouzon syndrome
- Facial Cleft
- Facial Infused Lipomatosis
- Facial Palsy
- Fibrous Dysplasia
- Frontonasal Dysplasia
- Hallermann-Streiff syndrome
- Hemangioma
- Hemifacial Microsomia/Goldenhar syndrome
- Microtia/atresia
- Miller Syndrome
- Moebius syndrome
- Nager Syndrome
- Pfeiffer syndrome
- Pierre Robin Sequence
- Saethre-Chotzen syndrome
- Treacher Collins
Resources & Support
Patient Worthy Posts on Craniofacial Syndromes
Prince and Pfeiffer
This article was originally written a year ago. We are republishing it today in Prince’s memory. I’m sure you’ve seen countless tributes to Prince
Mariana’s Medical Journey Part 2: A Diagnosis
This is part 2 of Marian’a journey, click here for Part 1. After some genetic testing, we eliminated the most common, Cruzons Syndrome, so we
Mariana’s Medical Journey Part 3: Embracing Difference
This is the last segment of Mariana’s medical journey written by Mariana’s mother, Carolina. Click here for part one and here for part two. Before
Changing the Use of “Special Needs”
From the perspective of a mother with a child who has a serious and rare medical condition, Pfeiffer syndrome. There are many reasons why the
Editor’s Choice: Rare Diseasing with Exercise and Dogs
Get informed and gear up for Rare Disease Week this Monday! Start with our Editor’s Choice. This week we have a sweet story about a
The Seattle Rare Disease Fair was a Blooming Success!
The First Ever Seattle Rare Disease Fair happened on June 3rd, 2017. And it was a BLOOMING success. The goal of the event was to
