Patient Groups

Patient Groups are so important to ICOSEP.

We encourage any patient group to join and share the importance of good growth. If you know of an organization which is not listed, please contact us and let us know: contactus@icosep.org. Also, if you are interested in building a group or organization in your country, this basic guide may be helpful.

Click here for a a Global listing  of medical groups and facilities specializing in endocrinology.

Abbreviations of some of the Groups of Medical Conditions Listed Below
AG=All Growth Conditions
AI= Adrenal Insufficiency   ACHON= Achondroplasia   CAH= Congenital Adrenal Hyperplasia
GHD= Growth Hormone Deficiency   ISS= Idiopathic Short Stature   IGFD=Insulin like Growth Factor Deficiency
MAS= McCune ALbright Syndrome   ONH= Optic Nerve Hypoplasia  PAN=Panhypopituitarism
RSS/SRS= Russell Silver Syndrome also known as Silver Russell Syndrome
SGA= Small for Gestational Age   SOD– Septo Optic Dysplasia  TS=Turner Syndrome

Country	Patient Groups/ Associations	Social Media
Africa	MAGIC Africa	All Growth
Argentina	Williams Syndrome	Klinefelt Syn and Turner Syndrome Sandberg Syn
Australia	CAH   TS SSPA PIT WS CAH	PAN  THY     SRS / SGA/  RSS AG     SOD/ONH GHD Achon
Austria	TS
Belarus	AG
Belgium	RSS (SRS)  TS
Bosnia & Herzegovina	AG (email contactus@icosep.org for details)
Brazil	FD (website under construction. Please email)	RSS (also known as Silver Russell Syndrome)
Bulgaria	AG Achon	TS
Cameroon		AG
Canada	GHD TS   Achon (Alberta) Achon (British Col) Achon (Ontario) Achon (Manitoba) Achon (Quebec) WS	GHD-English Adults-English AG-French RSS-SGA (French) Private RSS-SGA (French) Public     TS
Chile		SOD/ONH/PAN/de Morsiers
China	GHD
Columbia	TS	TS
Croatia	Rare
Czech	WMS Achon
Denmark	PIT TS Achon	SGA TS HPP
Dutch /Netherlands	CAH AI (Addisons) NS PIT SGA GH TS	PIT 1 PIT 2
Ecuador		TS
United Arab Emirates (All 7 emirates are listed in this category)	AG
England (Also see United Kingdom)	CAH   GHD/RSS and ORD   NS TS PAN Restricted Growth (RG)   Addisons	GHD   SOD #1   SOD (#2)   RG
Finland	TS  Achon	TS HPP
France	AG  HPP SRS/PAG (SSR/PAG) ORD TS-AGAT TS-et vous Achon	Grandir AG SRS (Alice) SRS Assoc AFIF TS-AGAT TS-et vous
Germany	RSS/SGA/ACH WMS    Skeletal   TS Prader W Achon	SRS (RSS)  GHD ORD
Greece	AG	AG
Greenland		HPP
Guatemala		AG AG2
Holland	TS FD Achon
Hungary		TS Achon
Iceland		HPP
India	AG ORD-diabetes	AG
Ireland	TS Other Rare ACH  Addisons  CAH	CAH   SOD GHD Achon
Israel	AG	AG
Italy	SOD SRS NS   GHD TS  PAN SGA ORD  General  ACHON	SOD SRS(1) SRS(2) AFADOC:LinkedIn Facebook YouTube Twitter FD
Japan	HPP  HPP (Eng Version) TSS-Growth  Pituitary     SRS/RSS ASrid-GAD Achon	ASrid-GAD (Facebook) ASrid-GAD (Twitter) ASrid-GAD (Instagram)
Kenya		All Growth Achon
Latvia	General
Lebanon	AG
Lithuania	TS	TS
Macedonia	AG	GH
Malaysia	AD
Mexico		TS   Achon
Netherlands	ORD   AI WMS  TS   All Growth Achon  GHD
New Zealand	ACH	RSS/SGA
Norway	WMS TS Achon	SGA HPP
Pakistan		CAH
Philippines		Achon
Poland	TS Achon	AG   TS    RSS/SRS
Portugal	Achon
Romania	Prader Willi Genetics	PW
Russia	All
Serbia	GHD  Rare	AG   GEN
Scotland	AG	RSS
Slovakia	WMS 1 WMS 2 Achon
Slovenia	ORD   THY
South Africa	Rare Pituitary Community
South Korea	AG
Spain	TS  ACHON #1  Achon#2  AG Addison FD Prader W	RSS SRS (facebook)  Addison FD
Sweden	NS AG Achon	SGA HPP
Switzerland	NS TS Achon
Taiwan	RSS
Uganda		AG
United Kingdom	ACH FD Restricted Growth All Growth   European Skeletal	FD SOD
United States of America	AI Achon  Achon Intl LPOTW Bloom Syn CAH GHD children GHD adults Hypophosphatasia ISS   IGFD   MAS NS-ORD ONH   PAN   RSS/SRS SGA   SOD    TS  TSS  TSGA   Williams Syn	CAH CPP   CS-Adults   CS Children   GHD children   GHD adults   HPP   IGFD   ISS  MAS   NS ONH   PAN   RSS-english RSS-SRS spanish    SGA   SOD children SOD/ONH Adults   Temple Syn  THY   TS   TSS  TSGA   Hypophosphatasia