We are excited to share that we have added three new Dental Treatment Centers! Families affected by ectodermal dysplasias now have 22 different centers across the United States to consider for their oral health care.
The National Foundation for Ectodermal Dysplasias (NFED) welcomes Eastman Institute for Oral Health, University of Rochester; Georgia Prosthodontics and New York University.
We know that finding a dentist can be challenging and may require travel. By expanding our Dental Treatment Centers network, we hope to increase your access to treatment with additional locations.
If you are interested in pursuing treatment at one of these centers, you must first apply through our program. Do not contact the center directly. Keep in mind that each center has its own policies and pricing.
Read on to learn more about our new partners!
Eastman Institute for Oral Health (EIOH), University of Rochester
The University Dental Faculty Group (UDFG) is part of the clinical care team within the University of Rochester’s Eastman Institute for Oral Health, located in Rochester, New York. Dental patients with any oral health care needs are treated across the dentistry spectrum, including patients with ectodermal dysplasia. The UDFG faculty team includes two periodontists, two prosthodontists, two orthodontists, two pediatric dentists and two oral and maxillofacial surgeons.
Konstantinos Chochlidakis, D.D.S., M.S., F.A.C.P. is an Associate Professor and Program Director, Prosthodontics and one of the specialists at UDFG. According to Dr. Chochlidakis, their center has treated several patients with ectodermal dysplasias over the years and they knew that most of these individuals were not aware of the services that EIOH provides.
“The quality of life for our patients with ectodermal dysplasias has improved significantly after receiving our treatment services. I reached out to the NFED in an effort to increase awareness about our team of specialists and other services that could benefit other patients. Becoming an NFED Treatment Center is a great accomplishment for us and we look forward to contributing and helping patients and their families with our dental services.”
Jeffrey Cookinham, 35, sought dental help for years before learning about Eastman Institute for Oral Health. You can read more about his transformation and experience. His case study was also published by the California Dental Association.
How EIOH Helps
EIOH provides interdisciplinary treatment for patients including a full range of routine and complex care. They have specialists in prosthodontics, periodontics, orthodontics, pediatric dentistry and oral and maxillofacial surgery who are also researchers and professors within EIOH.
Their Dental Treatment Center is also willing to work with the NFED’s Straumann Dental Implant Program. They have also been successful in helping patients file health claims.
“In New York State, a large portion of ectodermal dysplasia-related dental treatments are covered by medical insurance,” said Dr. Chochlidakis. “We have had great success through these medical submissions. The patients are responsible for the small portion that insurance doesn’t cover. In addition, we provide financial payment plans and discounts when we can as another way to help our patients. We pride ourselves in going the extra mile for all of our patients.”
Dr. Chochlidakis said his hope is that people whose lives are impacted due to their ectodermal dysplasias will learn about their Center, and know that help is just around the corner. Many patients with a wide range of medically complex conditions travel throughout the region to be treated by EIOH’s many specialists.
“I love working with patients with ectodermal dysplasias, and achieving amazing results after comprehensive treatment. To help enhance our patients’ ability to chew, speak, and function, that also provides an esthetic smile transforming their appearance is especially rewarding. Their smile and self-confidence after the final result is the best reward for me as a prosthodontist who specializes in treating complex cases.”
By working very closely with the NFED, Dr. Chochlidakis’s goal is to help improve the quality of life for as many patients with ectodermal dysplasias as possible.
“Our entire team is devoted to making our patients with ectodermal dysplasias feel comfortable and confident.”
Georgia Prosthodontics
Georgia Prosthodontics is a private practice with two locations: Gwinnett and Buckhead, Georgia. Carlos A. Castro, D.D.S., F.A.C.P., is one of three prosthodontists in the practice and the lead for the NFED Dental Treatment Center.
Their center is dedicated to the treatment of advanced implant, cosmetic and reconstructive dentistry. Dr. Castro and his team have seen eight patients with oligodontia linked to ectodermal dysplasia, three are currently in active treatment, and others are in orthodontic therapy or waiting for growth and development before intervention.
Free Dentures for Children Affected by Ectodermal Dysplasias Under 8
According to Dr. Casto, they understand that some patients can have difficulties covering fees for complex, multi-staged care.
“It is an expensive journey financially and emotionally for both parents and a child. For that reason, we have put in place strategies to help families cover their fees. We created ‘Joanees’ Gift’ for patients in need of complete dentures under age eight. This gift covers 100% the cost of the first maxillary denture.”
Georgia Prosthodontics will also assist families with medical insurance billing, guidance and assistance. They can also partner with others who want to help such as the NFED’s Straumann Dental Implant Program. Georgia Prosthodontics’ in-house laboratory, Prostho Dental Lab, will also provide complete dentures for patients under eight at no cost.
Georgia Prosthodontists created a 3-part video series to highlight Joanee’s transformation as she got her first denture!
Read More About JoanneeNew York University College of Dentistry
New York University College of Dentistry (NYU Dentistry), founded in 1865, is the third oldest and the largest dental school in the U.S., educating nearly 10 percent of our nation’s dentists. Dr. Robert Glickman, associate dean for clinical affairs and hospital relations and professor and chair of the NYU Department of Oral and Maxillofacial Surgery serves as the director for the NFED Dental Treatment Center at NYU Dentistry in Manhattan.
The NFED Dental Treatment Center will be housed within the NYU Dentistry Oral Health Center for People with Disabilities (OHCPD) provides the full scope of general and specialty oral health services. The OHCPD is fully staffed to provide comprehensive oral health care for children and adults affected by ectodermal dysplasias.
NYU became a Center after NYU Dentistry graduate Dr. Jonathan Richter contacted Dr. Glickman, to explore the possibility of OHCPD becoming a dental treatment center for people with ectodermal dysplasias. Dr. Richter has been involved with the NFED for the past 20 years with its Halloween Bash. Dr. Glickman subsequently reached out to NFED Executive Director Mary Fete to discuss how the College could collaborate with the foundation.
“By establishing an NFED Dental Treatment Center within the NYU Dentistry Oral Health Center for People with Disabilities, we hope to create a dental home for NFED patients, where they can access comprehensive, compassionate, respectful oral healthcare throughout the lifespan,” Dr. Glickman said.
Affording Dental Care
According to Dr. Glickman, NYU has many ways to work with patients to help them afford the dental care they need.
“We work with many foundations and companies, including Straumann and BioHorizons, to help defer some of the cost for patients,” Dr. Glickman said. “Specifically, donations from these companies have enabled us to create a Patient Care Access Fund, which allows us to subsidize patient care. We also accept Medicaid.”
Dr. Glickman noted that the greatest challenge is coordinating care among many different dental specialties and managing the transitional stages of care when a patient is still growing and changing.
“What we love most about working with patients affected by ectodermal dysplasia is seeing a smile on their faces,” he said. “Most of them have experienced extremely painful oral rehabilitation treatments. To be able to give them healthy smiles is the greatest reward a dentist could ask for.
Learn More and Apply to a Dental Treatment Center
My granddaughter, 18 months old, may have this syndrome. Could you please send information on how to get an appointment in New York City? Thank you
Hi, Julie – thanks for reaching out. You can either request a referral to one of our Dental Treatment Centers online, here: https://nfed.org/treat/dental-treatment-options/dental-treatment-centers/ or email our Director of Family and Community Programs, Kelley, at kelley@nfed.org, for more information. Best of luck – Veronica