Endocrine links for patients and families

• General endocrine / Medical
• Growth disorders
• Thyroid disorders
• Adrenal disorders
• Parathyroid disorders
• Diabetes insipidus / Histiocytosis
• Pituitary and brain tumor disorders
• Septo-optic dysplasia / Optic nerve hypoplasia
• Central precocious puberty
• Kallmann syndrome
• Polycystic ovary syndrome, hirsutism, and premature ovarian failure
• Sexuality and sexual differentiation disorders
• Gender identity / Transgender
• Prader–Willi syndrome
• Turner syndrome
• Williams syndrome
• DiGeorge syndrome / Velocardiofacial syndrome
• Russell–Silver syndrome
• Noonan syndrome
• McCune–Albright syndrome
• Klinefelter syndrome
• Marfan syndrome
• Metabolic bone disease / osteoporosis
• Hyperinsulinism / Hypoglycemia
• Genetics resources
• Rare diseases and support groups
• Other disorders

• Endocrine Web
• Endocrine Online
• Public Health Agency of Canada
• The Hormone Foundation
• European Society for Pædiatric Endocrinology: English-language handouts
• HealthLink BC
• Health Insurance BC
• MEDLINEplus Health Information: Endocrine System
• DrugWatch.com

• The Human Growth Foundation
  • Patterns of Growth
  • Disorders of Growth
  • Pediatric Growth Hormone Deficiency
  • Adult Growth Hormone Deficiency
• Little People of America
• The Hormone Foundation: Growth Disorders
• The MAGIC Foundation
  • Brochure: Childhood Growth Hormone Deficiency—General Information
  • Brochure: Adult Growth Hormone Deficiency—General Information
  • Brochure: Constitutional Growth Delay in Children
  • Brochure: Growth Hormone Therapy—Questions
  • Brochure: Failure to Thrive
  • Brochure: Children's Growth Abnormalities—An Overview
  • Brochure: Idiopathic Short Stature
  • Brochure: IGF-1 Deficiency
  • Brochure: Psychosocial Issues of Growth-Delayed Children
  • Brochure: Dental Problems Associated with Growth Hormone Deficiency
  • Brochure: Failure to Grow in Chronic Kidney Disease
  • Brochure: Small for Gestational Age—General Information
  • Brochure: Intrauterine Growth Retardation
• Roche Canada: Nutropin® information
• Here We Grow
• Genentech USA (Nutropin®): Growth Hormone Site
• EMD Serono Canada (Saizen®): Growth Therapies
• EMD Serono USA (Saizen®)
  • JustGrowth
• Eli Lilly Canada (Humatrope®)
• Eli Lilly USA: Humatrope®
• Sandoz Canada: Omnitrope®
• Sandoz USA: Omnitrope®

• The Thyroid Foundation of Canada
• The National Graves Disease Foundation
• The Thyroid Foundation of America
• Thyroid Cancer Canada
• Thyroid Cancer Survivors' Association
• Light of Light Foundation
• The American Thyroid Association
• European Thyroid Association
• Thyroid Federation International
• The MAGIC Foundation
  • Brochure: Congenital Hypothyroidism—General Information
  • Brochure: Clinical Hypothyroidism—General Information
• NIDDK Patient Information: Hypothyroidism
• NIDDK Patient Information: Hyperthyroidism
• Hypothyroidism and Your Infant (Texas)
• The Hormone Foundation: Thyroid Disorders
• ThyroLink (commercial site from Merck & Co.)
• MyThyroid.com
• Endocrine Web Thyroid links
• Thyroid Patients Canada (Yahoo group)

• The National Adrenal Diseases Foundation
• The MAGIC Foundation: Congenital Adrenal Hyperplasia—General Information
• Family Village Factsheet: Congenital Adrenal Hyperplasia
• NIH Patient Information: Facts about Congenital Adrenal Hyperplasia
• AAP Technical Report: Congenital Adrenal Hyperplasia
• Your Child with Congenital Adrenal Hyperplasia (Dr. Gary Warne)
  • French version
  • Vietnamese version
  • Chinese version
• Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency: A Guide for Patients and Their Families (Johns Hopkins)
  • Printer-friendly format
• Adrenal Hyperplasia Network (UK)
• Endocrine Online: Congenital Adrenal Hyperplasia
  • Advice Sheet: Congenital Adrenal Hyperplasia: Information for Adults
• Climb Congenital Adrenal Hyperplasia UK Support Group
• Congenital Adrenal Hyperplasia Support Group (Australia)
• Congenital Adrenal Hyperplasia Family Support and Education Network
• CARES (Congenital Adrenal Hyperplasia Research, Education and Support) Foundation
• Congenital Adrenal Hyperplasia: A Handbook for Parents (Texas)
• NIDDK Patient Information: Cushing's Syndrome
• NICHD Patient Information: Cushing Syndrome
• Cushing's Support and Research Foundation
• Addison and Cushing International Foundation
• Canadian Addison Society
• Addison's Disease Self-Help Group (UK)
  • Booklet: Addison's Disease Owner's Manual
  • Factsheet: Being the Parent of a Child with Addison's
• NIDDK Patient Information: Adrenal Insufficiency and Addison's Disease
• NIH Patient Information: Managing Adrenal Insufficiency
• Institute of Child Health (UK): Cortisol Deficiency and Steroid Replacement Therapy
• United Leukodystrophy Foundation
• NINDS Patient Information on Adrenoleukodystrophy
• Adrenal Cancer Support
• Endocrine Web Adrenal Links

• NIDDK Patient Information: Hyperparathyroidism
• The Paget Foundation: Primary Hyperparathyroidism
• see also DiGeorge Syndrome below
• Endocrine Web Parathyroid Links
• Parathyroid.com

• NIH Patient Information: Diabetes Insipidus: What Kind of Diabetes is That?
• Diabetes Insipidus Foundation, Inc.
• Nephrogenic Diabetes Insipidus Foundation
• Histiocytosis Association of America
• Histiocytosis Association of Canada

• The MAGIC Foundation: Panhypopituitarism—General Information
• The Pituitary Tumor Network Association
• The Pituitary Foundation (UK)
• NIDDK Patient Information: Prolactinoma
• NIDDK Patient Information: Acromegaly
• NICHD Patient Information: Pituitary Tumors in Children
• The Hormone Foundation: Pituitary Disorders

• The MAGIC Foundation
  • Brochure: Septo-Optic Dysplasia—General Information
  • Brochure: Optic Nerve Hypoplasia—General Information
• NINDS Patient Information: Septo-Optic Dysplasia
• FOCUS: ONH/SOD Information, Education and Support
• One Small Voice Foundation
  • Brochure: Optic Nerve Hypoplasia: A Guide for Families

• The MAGIC Foundation: Precocious Puberty—General Information
• Consensus Statement on the Use of Gonadotropin-Releasing Hormone Analogs in Children
• What Parents Should Know About Central Precocious Puberty (Abbott Laborastories)
• BCCH Booklet: Early Puberty in Girls (to order)
• BCCH Booklet: Puberté précoce chez la fille (to order)

• HYPOHH (for hypogonadotropic hypogonadism)
• Kallmann Syndrome Organisation

• Polycystic Ovarian Syndrome Association
• Coping with Polycystic Ovary Syndrome
• NICHD Patient Information: Polycystic Ovary Syndrome (PCOS)
• PCOS Frequently Asked Questions
• The Hormone Foundation: Polycystic Ovary Syndrome
• Endocrine Online: Polycystic Ovarian Syndrome
  • Advice Sheet: Polycystic Ovarian Syndrome
• SoulCysters
• PCOS: A Guide for Teens
• Premature Ovarian Failure Support Group
• Endocrine Online: Premature Ovarian Failure
• Endocrine Online: Hormone Replacement Therapy for Young Women

• Sunny Hill Hospital Sexual Health Resource Centre
• Options for Sexual Health (formerly Planned Parenthood Association of BC)
• BC's Won't Get Weird Sex Information
• Health Canada: Sexual Health Education
  • Canadian Guidelines for Sexual Health Education (HTML)
  • Canadian Guidelines for Sexual Health Education (PDF)
• How the Body Works: Sex Development (Hospital for Sick Children)
• dsdfamilies
• Parents, Families and Friends of Lesbians and Gays (PFLAG)
• PFLAG Canada
• PFLAG Transgender Network
• Intersex Society of North America
• Accord Alliance
• The MAGIC Foundation
  • Brochure: Genital and Reproductive Anomalies in Children—General Information
  • Brochure: When My Child May Have Fertility Problems
  • Brochure: Newborns with Non-Typical Genital Appearance
  • Brochure: Hypospadias
  • Brochure: Mayer-Rokitansky–Kuster–Hauser Syndrome
• BCCH Booklet: It's All Chemistry, for Girls (to order)
• BCCH Booklet: It's All Chemistry, for Boys (to order)
• BCCH Booklet: This is Slow Growing But Am I Stuck? (to order)
• Consortium on the Management of Disorders of Sex Differentiation
• Clinical Guidelines for the Management of Disorders of Sex Differentiation in Children
• Handbook for Parents
• Syndromes of Abnormal Sex Differentiation: A Guide for Patients and Their Families (Johns Hopkins)
• Adobe Acrobat® (PDF) format
• Androgen Insensitivity Syndrome Support Group UK
• AIS–DSD Support Group for Women and Families
• Androgen Insensitivity Syndrome Support Group Australia
• Complete Androgen Insensitivity Syndrome (Dr. Gary Warne)
  • Adobe Acrobat® (PDF) format
• Anorchidism Support Group (UK)
• Hypospadias & Epispadias Association
• UrologyHealth: Pediatric Conditions
• Mixed Gonadal Dysgenesis Support Group
• MRKH.org (Mayer–Rokitansky–Kuster–Hauser Syndrome)

• Vancouver Coastal Health Transgender Health Program
• trans-health: Transgender Health Program list server (British Columbia)
• International Foundation for Gender Education
• Canadian Professional Association for Transgender Health
• World Professional Association for Transgender Health, Inc.
  • Guidelines: Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People (7th version)
• Public Health Agency of Canada
  • Resource: Questions & Answers: Gender Identity in Schools
  • Resource: Questions & Answers: Sexual Orientation in Schools
• Pride Education Network
  • Resource: The Gender Spectrum
• Gender Identity Research and Education Society (GIRES)
• Booklet: A Guide to Hormone Therapy for Trans People
• TransGenderCare
• Families in TRANSition: A Resource Guide for Parents of Trans Youth
• Lambda Legal: Bending the Mold: An Action Kit for Transgender Students

• Foundation for Prader–Willi Research Canada
• Foundation for Prader–Willi Research USA
• British Columbia Prader–Willi Syndrome Association
• Ontario Prader–Willi Syndome Association
• Prader–Willi Syndrome Network
• Prader–Willi Syndrome Association (USA)
• Prader–Willi Syndrome Association (UK)
• International Prader–Willi Syndrome Organisation
• Newsletter: Wavelength
• The Family Village entry on PWS
• Vanderbilt Kennedy Center PWS Research
• PWS Notes

• Turner Syndrome Society of the US
  • Turner Syndrome: A Guide for Families
• Turner Society International Registry
• BC Turner Society Network
• Turner's Syndrome Society of Canada
• L'association du Syndrome de Turner du Québec
• UK Turner Syndrome Support Society
• Clinical Studies of Turner Syndrome at NICHD
• The MAGIC Foundation: Turner Syndrome—General Information
• The Hormone Foundation: Turner Syndrome
• Human Growth Foundation: Turner Syndrome
• Endocrine Online: Turner Syndrome in Adults
  • Advice Sheet: Health Care Issues for Women with Turner Syndrome

• Williams Syndrome Association
• Williams Syndrome Foundation
• Williams Syndrome Foundation (UK)

• Velo-Cardio-Facial Syndrome (VCFS) Educational Foundation
• Family Village Factsheet: DiGeorge Syndrome
• 22q and You Center
• Chromosome 22 Central
• International 22q11.2 Deletion Syndrome Foundation, Inc

• The MAGIC Foundation: Russell–Silver Syndrome—General Information
• Family Village Factsheet: Russell–Silver Syndrome
• Russell–Silver Syndrome Support

• Noonan Syndrome Support Group

• The MAGIC Foundation: McCune–Albright Syndrome—General Information
• The Paget Foundation: Fibrous Dysplasia
• NICHD Patient Information: McCune–Albright Syndrome
• Fibrous Dysplasia Support Online

• KS&A: Knowledge, Support & Action
• Klinefelter Syndrome Support Group
• American Association for Klinefelter Syndrome Information and Support
• Klinefelter's Syndrome Association UK
• NIMH: Klinefelter Syndrome (KS) and Other Sex Chromosome Variations
• NICHD Patient Information: Klinefelter Syndrome
• 47,XXY Klinefelter Syndrome

• Canadian Marfan Foundation
• National Marfan Foundation

• X-Linked Hypophosphatemic Rickets Network
• Osteoporosis Society of Canada
• NIAMS/NIH Osteoporosis and Related Bone Diseases National Resource Center
• Osteogenesis Imperfecta
• Kids and Their Bones: A Guide for Parents
• National Osteoporosis Foundation
• Osteogenesis Imperfecta Foundation
  • Update on Bisphosphonates as a Treatment for Osteogenesis Imperfecta
• OIparents (Yahoo Group)
• Osteogenesis Imperfecta Federation Europe
• Children's Brittle Bone Foundation

• Congenital Hyperinsulinism Center (CHOP)
• Children's Hyperinsulinism Fund (UK)
• sur1.org: The Website for Families of Children with Hyperinsulinism
• Congenital Hyperinsulinism International
• Yahoo PHHI Discussion Group

• Canadian Directory of Genetic Support Groups
• The Alliance of Genetic Support Groups
• Online Mendelian Inheritance in Man
• Talking Glossary of Genetic Terms

• NIDDK Directory of Endocrine and Metabolic Diseases Organizations
• Canadian Organization for Rare Disorders (CORD)
• Rare Disease Foundation
• The National Organization of Rare Disorders
• NIH Office of Rare Diseases
• The MAGIC Foundation: Rare Disorders
• Genetics Home Reference
• The National Information Center for Children and Youth with Disabilities
• Birth Defect Research for Children
• Family Support Institute (BC)
• Health Canada Online
  • Childhood & Adolescence
• Family Village Specific Diagnoses Card Catalog
• ORPHA.NET
• Exceptional Parent / PediaNet
• Vela Microboard Association of BC
• MedicAlert Canada
• Membership Assistance Application

Other disorders (top)

• NIDDK Patient Information: Multiple Endocrine Neoplasia Type 1
• NIH Patient Information: Pheochromocytoma
• Association for Multiple Endocrine Neoplasia Disorders (AMEND)
• Children's Tumor Foundation: Ending Neurofibromatosis Through Research
• Beckwith–Wiedemann Support Network
• Sotos Syndrome Support Association Canada
• Sotos Syndrome Support Association USA
• von Hippel-Lindau Family Alliance
• American Autoimmune Related Diseases Association
• Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers
• Cancer SurvivorLink