Klinefelter Syndrome (KS): Patients and Consumers

General Information:

• American Association for Klinefelter Syndrome
  The association maintains information about the condition, current studies, and connections to support groups.
• Mayo Clinic
  The clinic's website describes how to prepare for your first appointment to check for KS. It also summarizes symptoms, diagnoses, treatments, and complications.
• InterNational Council on Infertility Information Dissemination, Inc. (INCIID)
  The Infertility: Male Factor section of the website is a collection of fact sheets, research papers, personal stories, and other information. INCIID also maintains a forum  for online discussion .
• Knowledge, Support, and Action (KS&A)
• KS&A is an organization that provides information, education and support for individuals with KS and other sex chromosome variations, including Trisomy X (47,XXX) and XYY syndrome. The website features downloadable brochures, FAQs, and other resources on topics related to sex chromosome variations.
• National Library of Medicine
  The MedlinePlus information page on Klinefelter's syndrome is a compilation of resources with research and general information on KS.
• National Human Genome Research Institute (NHGRI)
  The NHGRI maintains an information page, Learning about Klinefelter syndrome.
• In conjunction with the clinical trials it conducts, the NICHD provides counseling and research for patients with suspected or diagnosed genetic disorders. Patients and their families receive comprehensive evaluations, counseling, and risk assessment. Patients may be referred to Dr. Margarita Raygada at raygadam@mail.nih.gov or call 301-451-8822.
• Hormone Health Network
  The network is a leading source of hormone-related health information for the public, health care providers, and the media, with information in both Spanish and English:
  • Gynecomastia/Ginecomastia
  • Infertility and Men
  • Low Testosterone and Men's Health
  • Osteoporosis and Men's Health

Use the foundation's search tool to find an endocrinologist

• The XXYY Project
  This is a support group for males with extra X and Y chromosomes and their families. Join the parent support group .

Services, Resources, and Support

• American Association for Klinefelter Syndrome
  The association is a national volunteer organization that offers information and connections to support groups for those affected.
• Daily Strength
  This online community has a support group dedicated to KS. Join the Klinefelter discussion group .
• Klinefelter Syndrome Information and Support
• In addition to general KS information, this site has links to email lists, a research survey, and email-based mailing lists for various networks and support groups, and international KS organizations.
• The XXYY Project gives information specifically about XXYY and other sex chromosomal conditions.

Resources on Infertility and Other Health Conditions Linked with KS

• Centers for Disease Control and Prevention (CDC) 
  The CDC studies issues related to infertility and has information about assisted reproductive technology.
• RESOLVE: The National Infertility Association
  RESOLVE provides timely, compassionate support and information to women and men who are affected by infertility.
  • Join one of RESOLVE's online support communities .
  • Find a professional to help with fertility consultation, third-party reproduction (such as in vitro fertilization with egg donation), or adoption.
  • Find a regional chapter and helpline .
• Society for Assisted Reproductive Technology (SART)
  SART is an organization of professionals dedicated to assisted reproductive technology, which includes in vitro fertilization.
  • Read SART's patient guide to assisted reproductive technology.
• National Cancer Institute (NCI)
  Part of the NIH, the NCI conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer; rehabilitation from cancer; and the continuing care of cancer patients and their families.
  • Learn more about breast cancer.
• National Osteoporosis Foundation
  The foundation has information about how to reduce bone weakness. Join a support community .

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.