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Diseases

Genetic and Rare Diseases Information Center (GARD)

Familial osteochondritis dissecans


Other Names for this Disease
  • Familial osteochondritis dissecans
  • Osteochondritis dissecans and short stature
  • Osteochondritis dissecans, short stature, and early-onset osteoarthritis
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 husband has had osteochondritis dissecans for a number of years and has undergone multiple surgeries. His condition is causing him more pain and disability than ever. He can hardly walk without assistance. He's been recommended knee replacements, but our insurance won't cover this surgery. Is there any advice that you can give me? I'm not sure how I can help him.

Our Answer

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

Are there organizations that can give us information and resources to help us learn about the management of chronic pain?

Yes. Additional information and supportive resources for chronic pain can be obtained from the following organizations:

American Chronic Pain Association (ACPA)
P.O. Box 850
Rocklin, CA 95677-0850

Toll-free: 800-533-3231
Telephone: 916-632-0922
Fax: 916-632-3208
E-mail: ACPA@pacbell.net
Web site: http://www.theacpa.org

The National Pain Foundation
14828 W 6 Ave, Ste 16-B Room 1
Golden, CO 80401-5000
Telephone: 720-541-6808
Fax: 720-541-6809
Web site: http://www.thenationalpainfoundation.org
Last updated: 2/9/2015

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

Many different organizations provide financial assistance and travel/lodging assistance to patients and their families. For more information about these organizations including their contact information, please visit GARD's "Support for Patients and Families" page. Click on the link to access these resources.

 

Last updated: 2/8/2015

How can I learn about research involving osteochondritis dissecans?

You can contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling the toll-free number listed below to speak with a specialist who can help you determine if you or someone you know is eligible for any clinical trials.

Patient Recruitment and Public Liaison Office
NIH Clinical Center
Bethesda, Maryland 20892-2655
Toll-free: 800-411-1222
Fax: 301-480-9793
Email: prpl@mail.cc.nih.gov
Web site: http://clinicalcenter.nih.gov/

You can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
http://clinicaltrials.gov/ct2/info/understand

A tutorial about clinical trials that can also help answer your questions can be found at the following link from the National Library of Medicine:
http://www.nlm.nih.gov/medlineplus/tutorials/clinicaltrials/htm/index.htm

Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases (ORD), part of the National Institutes of Health.
http://rarediseases.info.nih.gov/resources/5/support-for-patients-and-families#category17
Last updated: 2/8/2015
Other Names for this Disease
  • Familial osteochondritis dissecans
  • Osteochondritis dissecans and short stature
  • Osteochondritis dissecans, short stature, and early-onset osteoarthritis
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.