Klinefelter Syndrome: Patients and Consumers

General Information:

• American Association for Klinefelter Syndrome: Information about the condition, current studies, and connections to support groups
• Mayo 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): Infertility: Male Factor
• Klinefelter's Syndrome Association (UK)
  • "The Learning Needs of Boys with KS" (PDF - 464 KB) is for teachers and classroom assistants of boys who have a previous diagnosis of Klinefelter syndrome.
• 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. Visit http://www.genetic.org or call 888-999-9428 (303-999-9428 if outside the United States). For those with a prenatal diagnosis, KS&A has developed a collection of specific information for prospective parents at http://www.genetic.org/Portals/0/Public/Brochures/Prenatal_Diagnosis-VI_Letter.pdf (PDF - 350 KB).
• National Library of Medicine?MedlinePlus: Klinefelter syndrome
• National Human Genome Research Institute: 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.
• The Hormone Foundation: English/Spanish fact sheets
  • Klinefelter Syndrome (PDF - 62 KB)
  • Gynecomastia (PDF - 52 KB)
  • Infertility and Men
  • Low Testosterone and Men's Health
  • Osteoporosis and Men's Health (PDF - 48 KB)
• The XXYY Project: Males with extra X and Y chromosomes

Organizations, Support, Services

• American Association for Klinefelter Syndrome is a national volunteer association that offers information and connections to support groups for those affected.
• Daily Strength is an online support community.
  • Join the Klinefelter discussion group.
• The Hormone Foundation is a leading source of hormone-related health information for the public, health care providers, and the media.
  • Use its search tool to find an endocrinologist.
• Klinefelter's Syndrome Association (UK)
  • "The Learning Needs of Boys with KS" (PDF - 464 KB) is for teachers and classroom assistants of boys who have a previous diagnosis of Klinefelter syndrome.
• Klinefelter Syndrome Information and Support connects to support groups in the United States and Canada.
• 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. Visit http://www.genetic.org or call 888-999-9428 (303-999-9428 if outside the United States). For those with a prenatal diagnosis, KS&A has developed a collection of specific information for prospective parents at http://www.genetic.org/Portals/0/Public/Brochures/Prenatal_Diagnosis-VI_Letter.pdf (PDF - 350 KB).
• The XXYY Project gives information specifically about XXYY and other sex chromosomal conditions.
  • Join the parent support group.

Resources on Infertility and Other Health Conditions Linked with Klinefelter Syndrome

• The Centers for Disease Control and Prevention (CDC) studies issues related to infertility and has information about assisted reproductive technology.
• RESOLVE: The National Infertility Association 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.
• The Society for Assisted Reproductive Technology (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.
• Part of the NIH, the National Cancer Institute 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.
• The National Osteoporosis 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.