Information Materials

Condition / disorder described
Language
Country
Website or PDF
Publisher / source organisation
Rating
DSD
English
Europe
OII Europe (Organisation Intersex International Europe)
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DSD
English
Europe
European Reference Network on Rare Endocrine Conditions (Endo-ERN)
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0/5 (0 votes)
Isolated hypogonadotropic hypogonadism (IHH)
English
Europe
European Reference Network on Rare Endocrine Conditions (Endo-ERN)
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0/5 (0 votes)
DSD (general information and family support)
English
United Kingdom
DSD Families
DSD (identified during adolescence (general information; delayed puberty or androgen response)
English
United Kingdom
DSD Families
46,XX ovotesticular DSD
English
United Kingdom
DSD Families
46,XX testicular DSD
English
United Kingdom
DSD Families
Congenital adrenal hyperplasia (CAH)
English
United Kingdom
DSD Families
Mayer–Rokitansky–Küster–Hauser (MRKH) syndrome
English
United Kingdom
DSD Families
Complete gonadal dysgenesis
English
United Kingdom
DSD Families
DAX1 / NR0B1 duplication
English
United Kingdom
DSD Families
Denys–Drash syndrome
English
United Kingdom
DSD Families
Frasier syndrome
English
United Kingdom
DSD Families
Partial gonadal dysgenesis
English
United Kingdom
DSD Families
Steroidogenic factor 1 (SF1/NR5A1) deficiency
English
United Kingdom
DSD Families
Androgen insensitivity syndrome (AIS)
English
United Kingdom
DSD Families
Persistent Müllerian duct syndrome (PMDS)
English
United Kingdom
DSD Families
Testicular regression syndrome
English
United Kingdom
DSD Families
Clitoromegaly
English
United Kingdom
DSD Families
Genital difference / atypical genital appearance
English
United Kingdom
DSD Families
Hypospadias
English
United Kingdom
DSD Families
Undescended testes
English
United Kingdom
DSD Families
17α-hydroxylase deficiency
English
United Kingdom
DSD Families
17β-hydroxysteroid dehydrogenase deficiency
English
United Kingdom
DSD Families
3β-hydroxysteroid dehydrogenase deficiency
English
United Kingdom
DSD Families
5α-reductase deficiency
English
United Kingdom
DSD Families
Leydig cell hypoplasia
English
United Kingdom
DSD Families
StAR / CYP11A1 deficiency
English
United Kingdom
DSD Families
Mixed gonadal dysgenesis
English
United Kingdom
DSD Families
Klinefelter syndrome (47,XXY)
English
United Kingdom
DSD Families
Turner syndrome (45,X)
English
United Kingdom
DSD Families
Androgen insensitivity syndrome (AIS)
English
United Kingdom
British Society for Paediatric Endocrinology and Diabetes (BSPED)
Androgen insensitivity syndrome (AIS)
English
United Kingdom
British Society for Paediatric Endocrinology and Diabetes (BSPED)
DSD (family information and support)
English
United Kingdom
DSD Families
DSD (information for teenagers)
English
United Kingdom
DSD Teens (developed with UK endocrinology and genetics partners)
DSD
English
United Kingdom
European Society for Paediatric Endocrinology (ESPE)
Androgen insensitivity syndrome (AIS)
English
United Kingdom
National Health Service (NHS)
Androgen insensitivity syndrome (AIS)
English
United Kingdom
University College London Hospitals NHS Foundation Trust (UCLH)
Androgen insensitivity syndrome (AIS)
English
United Kingdom / international
Androgen Insensitivity Syndrome Support Group (AISSG)
17β-hydroxysteroid dehydrogenase deficiency
Dutch
Netherlands
Expertisenetwerk DSD / DSDNederland
5α-reductase deficiency
Dutch
Netherlands
Expertisenetwerk DSD / DSDNederland
Androgen insensitivity syndrome (AIS)
Dutch
Netherlands
Expertisenetwerk DSD / DSDNederland
Leydig cell hypoplasia
Dutch
Netherlands
Expertisenetwerk DSD / DSDNederland
Ovotesticular DSD
Dutch
Netherlands
Expertisenetwerk DSD / DSDNederland
XY gonadal dysgenesis
Dutch
Netherlands
Expertisenetwerk DSD / DSDNederland
17α-hydroxylase / 17,20-lyase deficiency
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
17β-hydroxysteroid dehydrogenase deficiency
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
3β-hydroxysteroid dehydrogenase deficiency
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
46,XX DSD
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
46,XY DSD
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
5α-reductase deficiency
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Androgen insensitivity syndrome (AIS)
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Congenital adrenal hyperplasia (CAH)
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
DSD
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Gonadal dysgenesis
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Hypospadias
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Klinefelter syndrome (47,XXY)
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
LH/hCG receptor defect / Leydig cell hypoplasia
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Mayer–Rokitansky–Küster–Hauser (MRKH) syndrome
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Ovotesticular DSD
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Persistent Müllerian duct syndrome (PMDS; AMH or AMH-receptor deficiency)
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Sex chromosome DSD
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Steroidogenic acute regulatory protein (StAR) deficiency / lipoid congenital adrenal hyperplasia
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Testicular regression syndrome
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Turner syndrome (45,X)
Dutch
Netherlands
Cyberpoli / Artsen voor Kinderen
Androgen insensitivity syndrome (AIS)
French
France
Haute Autorité de Santé (HAS)
17β-hydroxysteroid dehydrogenase deficiency
German
Germany
Intergeschlechtliche Menschen e.V. (IM e.V.)
5α-reductase deficiency
German
Germany
Intergeschlechtliche Menschen e.V. (IM e.V.)
Androgen insensitivity syndrome (AIS)
German
Germany
Intergeschlechtliche Menschen e.V. (IM e.V.)
Congenital adrenal hyperplasia (CAH)
German
Germany
Intergeschlechtliche Menschen e.V. (IM e.V.)
DSD
German
Germany
Intergeschlechtliche Menschen e.V. (IM e.V.)
LH receptor defect / Leydig cell hypoplasia
German
Germany
Intergeschlechtliche Menschen e.V. (IM e.V.)
Mixed gonadal dysgenesis
German
Germany
Intergeschlechtliche Menschen e.V. (IM e.V.)
Ovotesticular DSD
German
Germany
Intergeschlechtliche Menschen e.V. (IM e.V.)
Complete gonadal dysgenesis
German
Germany
Intergeschlechtliche Menschen e.V. (IM e.V.)
DSD
German / English
Switzerland
Varia Suisse
Androgen insensitivity syndrome (AIS)
Swedish
Sweden
Swedish National Board of Health and Welfare (Socialstyrelsen)
Androgen insensitivity syndrome (AIS)
Swedish
Sweden
Swedish National Board of Health and Welfare (Socialstyrelsen)

Last revised