Nemours is world-renowned for diagnosing and treating skeletal dysplasias, including Ellis-Van Creveld syndrome. It’s also sometimes called “chondroectodermal dysplasia” because it involves the skin, hair and nails, as well as differences in the cartilage and bones. If your baby has Ellis-Van Creveld syndrome, or you’re an expectant parent and need to get a diagnosis, we’re here to help. Our Nemours experts have the experience and training to answer your questions, ease your concerns, and build a coordinated long-term care team to give your child the best possible chance for a healthy future.
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Ellis-Van Creveld Dysplasia
Internationally Recognized Treatment and Early Diagnosis for Ellis-Van Creveld Syndrome
Services We Offer for Ellis-Van Creveld Syndrome
Nemours offers a full range of care for newborns, kids and teens with Ellis-Van Creveld syndrome. Services vary by specialist and location, but may include:
- fetal diagnostic testing in our perinatology and fetal medicine centers to help us diagnose and make a treatment plan for when your baby’s born
- neonatal care for coordinated, critical care immediately after birth
- advanced medical imaging to monitor changes in the bones, joints and organs
- congenital heart defect expertise that includes heart surgery
- gastroenterology helps with nutrition support
- genetic testing to assist with diagnosis and family planning
- orthopedic care from one of the largest and most widely respected pediatric programs in the world, providing innovative work limb realignment, as well as hand surgery
- orthotics that can be custom-made right in the hospital
- otolaryngology (or “ENT”) expertise for ear infections and audiology needs
- pain management programs just for kids to help with symptoms or post-surgery pain
- physical medicine and rehabilitation offer physical, occupational and speech therapy
- psychology and social work to help kids emotionally cope with their condition
- pulmonology care for respiratory needs as kids grow
- transition of care when it’s time for adult care and services
Why Choose Us for Ellis-Van Creveld Dysplasia Diagnosis and Care
Nemours Children’s Health System has been recognized for delivering advanced pediatric orthopedic care since 1940. Families from all over the world travel to see our skeletal dysplasia experts. Our genetics doctors have the experience and training to diagnose even the rarest types of skeletal dysplasia, like Ellis-Van Creveld dysplasia. Once we’ve identified your child’s condition, our care teams work together to create a personalized treatment plan that meets your family’s needs.
Treatment is led by our world-renowned pediatric orthopedic experts, including Dr. William Mackenzie. Since skeletal dysplasia can evolve and change with time, Nemours has established one of the world’s top pediatric imaging programs to track and measure changes to children’s bodies.
Our care navigators coordinate appointments since most kids need to see different specialists, and some may need multiple surgeries. We also help kids with Ellis-Van Creveld dysplasia achieve the highest possible function and quality of life through access to Nemours experts, clinical programs and support services, including:
- clinical trials research opportunities
- support services and community resources
Regional Ellis-Van Creveld Dysplasia Highlights
Services, programs, facilities and care teams differ at each location. Call for details.
We offer complete care for children with Ellis-Van Creveld dysplasia at Nemours Children’s Hospital, Delaware (Wilmington, Del.) and select Nemours Children's Health locations.
Nemours Children’s Hospital, Delaware is ranked among the best children’s hospitals in the nation for pediatric orthopedics and surgery by U.S. News and World Report .
We offer complete care for children with Ellis-Van Creveld dysplasia at Nemours Children’s Hospital (Orlando) and select Nemours Children’s Specialty Care locations.
We offer complete care for children with Ellis-Van Creveld dysplasia at Nemours Children's Health, Jacksonville and our hospital affiliates, Wolfson Children’s Hospital and Mayo Clinic in Florida, with outpatient and follow-up appointments available at select Nemours locations.
Nemours orthopedic specialists provide the care and orthopedic surgery and hold dual physician leadership roles at Wolfson Children’s Hospital’s orthopedics team, ranked by U.S. News & World Report as one of the 50 best children’s hospitals in the nation for orthopedics.
We offer care for children with Ellis-Van Creveld dysplasia at Nemours Children’s Specialty Care, Pensacola and our hospital affiliate, West Florida Healthcare, with outpatient and follow-up appointments also available at select Nemours Children’s Specialty Care locations.
Patient Stories
Sometimes the best support and peace of mind comes from families who’ve been there. Meet some of the inspiring kids we’ve been honored to treat.
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Research & Clinical Trials
At Nemours, we’re actively researching new approaches for childhood disease prevention, diagnosis and treatment.
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