Primary Ovarian Insufficiency Resources

General Information

• The Society for Reproductive Medicine provides a Premature Ovarian Failure (POF) Fact Sheet (PDF 234 KB). POF is another name for POI.
• The National Fragile X Foundation's Fragile X-Associated POI (FXPOI) page contains answers to questions about FXPOI.
• The Turner Syndrome Society of the United States' (TSSUS) What is TS? page includes a section on POI.
• Up to Date^® Patient Information: Primary Ovarian Insufficiency
  This evidence-based, physician-authored resource offers information on POI that women and their families can use to make decisions about care.

Services, Resources, and Support

Adoption

• Supported by the Administration for Children and Families, part of the HHS, the Child Welfare Information Gateway has information on all aspects of adoption.
• Get started with an introduction to adoption
• Where do I start?
• Call the Gateway: 800-394-3366 or 703-385-7565

Assisted Reproductive Technologies (ART), Including In Vitro Fertilization (IVF)

• The American Congress of Obstetricians and Gynecologists (ACOG) is the nation's leading group of obstetricians and gynecologists (OB/GYNs) and other professionals providing healthcare for women.
• The American Society for Reproductive Medicine (ASRM) is devoted to advancing knowledge and expertise in reproductive medicine and biology.
• Read ASRM's booklet Assisted Reproductive Technologies: A Guide for Patients (PDF 2.1 MB)
• Find a health professional
• The Centers for Disease Control and Prevention (CDC) studies infertility and publishes an annual report on success rates for assisted reproductive technology at specific fertility clinics in the United States. View CDC resources on ART
• RESOLVE: The National Infertility Association maintains a list of member fertility consultants, adoption service providers, and others in its professional services directory. Find a professional to help with fertility consultation, third-party reproduction (such as IVF with egg donation), and adoption.

Health Considerations Related to POI

Bone Health and Osteoporosis

• The National Institute of Arthritis and Musculoskeletal and Skin Diseases has information and resources on bone health and osteoporosis.
  • Call the NIH Osteoporosis and Related Bone Diseases National Resource Center at 800-624-BONE (2663)
  • Get fast facts about osteoporosis, including prevention tips
  • Find an osteoporosis doctor

Eye Problems

• The National Eye Institute has resources on dry eye syndrome and ocular surface disease.
• Read about dry eye and see a video
• The American Academy of Ophthalmology is a member association for ophthalmologists.
• Find an eye doctor

Heart Disease

• The National Heart, Lung, and Blood Institute (NHLBI) has resources on heart health and disease prevention.
• View NHLBI publications about heart and vascular diseases
• Call the NHLBI hotline for information about heart disease and lowering your risk for heart disease: 800-575-WELL (9355) or 301-592-8573

Support for Teens

• NICHD researchers have written an article, "A family systems approach to primary ovarian insufficiency," for parents and clinicians that includes tips and tools for helping support adolescents who have received a POI diagnosis.

Thyroid Function

• The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)'s National Endocrine and Metabolic Diseases Information Service has information about low thyroid function, also called hypothyroidism, including symptoms and diagnosis.
  • Visit the hypothyroidism information pages
  • Call the information service: 888-828-0904

Turner Syndrome

• The NICHD provides extensive information on Turner Syndrome, a related condition.
• The Turner Syndrome Society of the United States (TSSUS) has compiled a range of information about living with Turner Syndrome. The society also holds an annual conference with speakers from a variety of professions, including medical experts, social workers, educators, and psychologists.

Visit TSSUS's healthcare topics page.

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

• At the Agency for Healthcare Research and Quality (AHRQ) 2011 Annual Conference, Lawrence Nelson, M.D., head of the NICHD Integrative Reproductive Medicine Group, gave a presentation discussing the menstrual cycle as an indicator of overall health and introducing the Menstrual Cycle Consortium.
• The Genetic and Rare Diseases Information Center (GARD), part of the NIH Office of Rare Diseases Research, offers information about clinical trials, conferences, and other scientific resources regarding premature ovarian failure.
• NIH Research Radio has released several podcasts about POI:
• News update: Slowing an immune attack on mouse ovaries (July 15, 2011)
• Young women with menopause-like condition at risk for depression (January 18, 2011)
• Delay in diagnosis of menopause-like condition in young women linked to low bone density(August 13, 2009)
• The Online Mendelian Inheritance in Man database contains information about genes linked to premature ovarian failure .

Support for Teens

• Covington, SN, Hillard, PJ, Sterling, EW, Nelson, LM, Primary Ovarian Insufficiency Recovery Group. (2011). A family systems approach to primary ovarian insufficiency. Journal of Pediatric & Adolescent Gynecology, Jun;24(3):137-41. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3094722/ (Full Text)
• American Society for Reproductive Medicine (ASRM) is devoted to advancing knowledge and expertise in reproductive medicine and biology. It offers publications and other resources .

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