Primary Ovarian Insufficiency (POI): For Patients and Consumers

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
• The National Library of Medicine's MedlinePlus page Adoption offers extensive resources on adoption, including information in Spanish, with links to adoption options, coping, news reports, specific conditions, financial issues, law and policies, clinical trials, and journal articles.

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 health care for women. Find an OB/GYN 
• 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), (TTY: 202-466-4315)
  • 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 (TTY: 240-629-3255)

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 (TTY: 866-569-1162)

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 health care topics  page.