- Carney syndrome
- Carney myxoma-endocrine complex
- Myxoma, spotty pigmentation, and endocrine overactivity
Your QuestionMy mother has recently been diagnosed with Carney Complex/Cushings syndrome. Where can we find more information and a place where she can receive emotional support? A lot of the physicians involved in her care are unfamiliar with this condition.
We have identified the following information that we hope you find helpful. If you still have questions, please contact us.
Questions on this page
- Where can I find more information on Carney complex?
- Where can I find support resources for people with Carney complex?
- Are there currently any clinical trials for Carney complex?
- Who can I contact to find out more about participating in clinical trials?
- Where can I find transportation and lodging resources for clinical trials participants?
- Where can I find general information about clinical trials?
- How can I find a genetics professional in my area?
We have identified sources of information on Carney complex that can help you learn more about this condition. You may wish to share some of these resources with health care providers who are unfamiliar with Carney complex.
For a comprehensive review of Carney complex you can visit GeneReviews. This review also provides information on the recommended clinical tests and treatment for Carney complex. GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions.
Two articles from the online eMedicine Journal provide information on Carney complex at the following links. You may need to register to view the articles, but registration is free. Articles on eMedicine are written for healthcare professionals and may be difficult to understand for those without medical training. We suggest that you share this resource with a health care provider if you have questions.
Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge. You can access the page on Carney complex by visiting the following link.
More information on Carney complex is also available from the Web site for the New Zealand Dermatological Society.
Cancer Hope Network
2 North Road, Suite A
Chester, NJ 07930
Web site: http://www.cancerhopenetwork.org
Rare Cancer Alliance
1649 North Pacana Way
Green Valley, AZ 85614
Web site: http://www.rare-cancer.org
Cancer Coalition of America (Information and financial assistance for patients)
9396 Richmond Ave #307
Houston, TX 77063
Web site: http://www.cancercoalition.com
American Cancer Society, Inc. (Local chapters available)
1599 Clifton Road NE
Atlanta, GA 30329
Web e-mail form: http://www.cancer.org/asp/contactUs/cus_global.asp
Web site: http://www.cancer.org
Patient Recruitment and Public Liaison Office
NIH Clinical Center
Web site: http://clinicalcenter.nih.gov/
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:
Genetics clinics are a source of information for individuals and families regarding genetic conditions, treatment, inheritance, and genetic risks to other family members. More information about genetic consultations is available from Genetics Home Reference. To find a genetics clinic, we recommend that you contact your primary healthcare provider for a referral.
The following online resources can help you find a genetics professional in your community:
- The National Society of Genetic Counselors provides a searchable directory of US and international genetic counseling services.
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The University of Kansas Medical Center provides a list of US and international genetic centers, clinics, and departments.
- The American Society of Human Genetics maintains a database of its members, which includes individuals who live outside of the United States. Visit the link to obtain a list of the geneticists in your country, some of whom may be researchers that do not provide medical care.