When you have a rare disorder like ectodermal dysplasia, it’s not easy to find a doctor or dentist who has a lot of experience in treating the condition. Some may go their whole career and never see a patient with ectodermal dysplasia. The process can be frustrating and time-consuming for you. Consider working with a care provider who is willing to study and learn about ectodermal dysplasia because they are interested in you and how to best care for you.
Here are resources to get you started in finding a partner for your medical and dental care:
- Check out one of our Dental Treatment Centers led by dental teams with experience in treating the ectodermal dysplasias.
- Contact the closest University School of Dentistry or Medical Center for specialty care.
- Ask your trusted provider for referrals.
- Contact us at the NFED office for a listing of care providers for your state. We can also assist you in locating a physician or dentist. We don’t recommend or endorse medical specialists, but we can assist you in finding medical and dental professionals in the U.S. recommended by NFED families or by other clinicians.
- Contact a local hospital and ask if they have a doctor’s referral program.
- Review the care provider list provided by your insurance company.
- Check out Gene Reviews, the National Organization for Rare Disorders, and Medscape Reference. Experts are often called upon to contribute to online publications such as these. Many of these resources list the author’s name and institution and may provide an e-mail address or phone number.
- MedlinePlus is a website designed by the National Library of Medicine to help you research your health questions. It provides links to directories to help you find health professionals, services, and facilities.
- Research professional associations for specialists.
Other blogs you may be interested in:
- Organizing Medical and Dental Information
- Genetic Counseling
- Information you should take to your Doctor or Dentist