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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Dentinogenesis imperfecta 1


Other Names for this Disease

  • Capdepont teeth
  • Dentinogenesis imperfecta Shields type 2
  • Dentinogenesis imperfecta type 1
  • Dentinogenesis imperfecta without osteogenesis imperfecta
  • Opalescent dentin
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

My 13-year-old son was diagnosed with dentinogenesis imperfecta when he was a baby. Are there any programs in New York to help with the cost of his dental work?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Are there any regulations in New York State that provide financial benefits to individuals with dentinogenesis imperfecta?

Insurance regulations vary from state to state; for questions regarding insurance policies in other states, you can contact your state health department.

In December 1999, New York State enacted a regulation (11 NYCRR Section 52.16 (c) (9), Regulation 62) to help provide dental benefits to individuals with congenital conditions that affect tooth development. This regulation states that “no [health insurance] policy shall limit or exclude coverage by type of illness, accident, treatment or medical condition…[including] dental care or treatment necessary due to congenital disease or anomaly.” [1]

Information about how to obtain dental coverage for someone with dentinogenesis imperfecta is available in the following article:
Gupta P, Segelnick SL, & Palat M. (2007). Congenital Diseases and a New York State Regulation: Help is Here. NY State Dent J, 73(4): 20-27.
Last updated: 3/16/2011

How can I find low-cost dental care?

The National Institute of Dental and Craniofacial Research (NIDCR), one of the federal government’s National Institutes of Health, leads the nation in conducting and supporting research to improve oral health. As a research organization, NIDCR does not provide financial assistance for dental treatment. The following resources, however, may help you find the dental care you need. NIDCR sometimes seeks volunteers with specific dental, oral, and craniofacial conditions to participate in research studies, also known as clinical trials. Researchers may provide study participants with limited free or low-cost dental treatment for the particular condition they are studying. Visit the NIDCR Web site to learn more about NIDCR clinical trials.

For a complete list of all federally funded clinical trials, visit http://clinicaltrials.gov. You can also call the Patient Recruitment and Public Liaison Office at 1–800–411–1222 to see if you qualify for any clinical trials taking place at the National Institutes of Health campus in Bethesda, Maryland.

Dental schools can be a good source of quality, reduced-cost dental treatment. Most of these teaching facilities have clinics that allow dental students to gain experience treating patients while providing care at a reduced cost. Experienced, licensed dentists closely supervise the students. Post-graduate and faculty clinics are also available at most schools.

Dental hygiene schools may also offer supervised, low-cost preventive dental care as part of the training experience for dental hygienists. To find out if there are schools of dentistry or dental hygiene in your area, call your state dental society or association. These organizations are listed in your telephone book. Visit the American Dental Association Web site for a complete list of U.S. dental schools. The American Dental Hygienists’ Association Web site lists U.S. dental hygiene programs.

You can also contact the National Oral Health Information Clearinghouse at:

National Oral Health Information Clearinghouse
1 NOHIC Way
Bethesda, Maryland 20892–3500
Toll-free: 1–866–232–4528

The Bureau of Primary Health Care, a service of the Health Resources and Services Administration (HRSA), supports federally-funded community health centers across the country that provide free or reduced-cost health services, including dental care. To obtain a list of centers in your area, contact the HRSA Information Center toll-free at 1–888–Ask–HRSA (1–888–275–4772) or visit their web site at http://findahealthcenter.hrsa.gov.

The Centers for Medicare & Medicaid Services (CMS) administers three important federally-funded programs: Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP). Medicare is a health insurance program for people who are 65 years and older or for people with specific disabilities. Medicare does not cover most routine dental care or dentures. Visit http://www.cms.gov/MedicareDentalCoverage/.

Medicaid is a state-run program that provides medical benefits, and in some cases dental benefits, to eligible individuals and families. States set their own guidelines regarding who is eligible and what services are covered. Most states provide limited emergency dental services for people age 21 or over, while some offer comprehensive services. For most individuals under the age of 21, dental services are provided under Medicaid. Visit http://www.cms.gov/mmrr/Downloads/MMRR2013_003_03_b01.pdf.

CHIP helps children up to age 19 who are without health insurance. CHIP provides medical coverage and, in most cases, dental services to children who qualify. Dental services covered under this program vary from state to state. Visit http://www.cms.gov/CHIPDentalCoverage/.

CMS can provide detailed information about each of these programs and refer you to state programs where applicable. If you currently have Medicare, call 1–800–MEDICARE (1–800–633–4227). Others may call 1–877–267–2323 or visit the CMS web site at http://www.cms.gov. You can also write to them at the address below:

Centers for Medicare & Medicaid Services
7500 Security Boulevard
Baltimore, Maryland 21244

Your state or local health department may know of programs in your area that offer free or reduced-cost dental care. Call your local or state health department to learn more about their financial assistance programs. You can click on the link above to view health departments by state.

Finally, the United Way may be able to direct you to free or reduced-cost dental services in your community. Check your telephone book for the number of your local United Way chapter.
Last updated: 7/29/2014

Are there any advocacy organizations for individuals and families with dentinogenesis imperfecta?

Yes. The following groups provide a wide range of services, supportive resources, and information. You can contact these groups to inquire about financial resources they may be aware of for individuals with dentinogenesis imperfecta.

Healthy Smiles, Healthy Children
211 E. Chicago Ave., Suite 1700
Chicago, IL 60611-2637
Telephone: 312-337-2169
Fax: (312) 337-6329
E-mail: hshc@aapd.org/
Web site: http://www.aapd.org/foundation/

Osteogenesis Imperfecta Foundation
804 W. Diamond Ave, Suite 210
Gaithersburg, MD 20878
Toll-free: 1-800-981-2663
Telephone: 301-947-0083
E-mail: bonelink@oif.org
Web site: http://www.oif.org/site/PageServer/
Page on dentinogenesis imperfecta: http://www.oif.org/site/DocServer/Dental_Care.pdf?docID=8101
Last updated: 3/16/2011

How might I find a dentist that is familiar with dentinogenesis imperfecta?

There is no national list of dentists who treat people with dentinogenesis imperfecta.  Schools of dentistry or the dental departments at major medical centers may be helpful in locating dentists who are familiar with dentinogenesis imperfecta. The American Academy of Pediatric Dentistry is a good source of pediatric dentists, although any particular member of this group may or may not see people with dentinogenesis imperfecta.[2] Contact the Academy at:

American Academy of Pediatric Dentistry
211 East Chicago Avenue, #700
Chicago, IL 60611-2663
Telephone: 312-337-2169
Fax: 312-337-6329
Online e-mail: http://www.aapd.org/contact/
Web site: http://www.aapd.org/
Last updated: 3/16/2011

How can I find non-profit organizations that provide information on obtaining financial aid for medical treatments?

Information on financial aid for medical treatments can be obtained from the following patient advocacy organizations:

Patient Advocate Foundation
700 Thimble Shoals Boulevard
Suite 200
Newport News, VA 23606
Phone: 1-800-532-5274
Fax: 757-873-8999 
Online e-mail request form: http://gallery.patientadvocate.org/requests/paf_cm_request.php/
Web site: http://www.patientadvocate.org/

Family Voices
2340 Alamo SE, Suite 102
Albuquerque, NM 87106
Toll-free: 1-888-835-5669
Phone: 505-872-4774
Fax: 505-872-4780
Online E-mail Contact Form: http://www.familyvoices.org/contact
Web site:
http://www.familyvoices.org/ 

211 Information and Referral services provide people with local information about and referrals to human services for everyday needs and in times of crisis.

Also community voluntary agencies and service organizations such as the Salvation Army, Lutheran Social Services, Jewish Social Services, Catholic Charities, and the Lions Club often offer help. These organizations are listed in your local phone directory. Some temples, mosques, churches, and synagogues may provide financial help or services to their members.

Fundraising is another mechanism to consider. Some patients find that friends, family, and community members are willing to contribute financially if they are aware of a difficult situation. Contact your local library for information about how to organize fundraising efforts
Last updated: 7/29/2014

References
Other Names for this Disease
  • Capdepont teeth
  • Dentinogenesis imperfecta Shields type 2
  • Dentinogenesis imperfecta type 1
  • Dentinogenesis imperfecta without osteogenesis imperfecta
  • Opalescent dentin
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.