Patient Groups unite in ICOSEP.

We encourage all endocrine related patient groups to join our network. There is no fee. The only ask of groups is that you join your voice to our annual Children’s Growth Awareness effort. We provide materials to share easily.

If you are experiencing access to endocrine care in your area, please send us an email with the details of what is happening and who the contact person(s) is to make change happen.
If have a group which we do not have listed or you are interested in building a group in your country, this basic guide may be helpful. To include your organization as a member or contact us, email: contactus@icosep.org.

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- all countries available
 MAGIC Africa All Growth

 

Argentina
Williams Syndrome Klinefelter Syn / Turner Syndrome/
Sandberg Syn

 

Australia

CAH  
TS
SSPA
PIT

WS

CAH

PAN 
THY    
SRS / SGA/  RSS
AG    
SOD/ONH
GHD
Achon

Algeria
  TS

 

Belarus
AG  
belgiumb

 

Belgium
RSS (SRS) 
TS
3m syn

 

Bosnia & Herzegovina
AG (email contactus@icosep.org for details)  
Brazil

 

Brazil
FD (website under construction. Please email) RSS (also known as Silver Russell Syndrome)
bulgaria

 

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
chili

 

Chile
  SOD/ONH/PAN/de Morsiers

 

China
 All GHD and Rare  

 

Columbia
TS   TS  
Croatia
Rare  
Czech_Republic

 

Czech

Achon 

 

Denmark
PIT
TS
Achon
SGA
TS
HPP

 

Dutch /Netherlands
All Adrenal 
NS
PIT
SGA/RSS/SRS
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/Pit
Restricted Growth (RG)  
Addisons
GHD  
SOD
RG

 

Finland

TS 

Achon 

TS
HPP

 

France

AG 
HPP
SRS/PAG (SSR/PAG)
ORD
TS-AGAT
TS-et vous
Achon  
Noonan Syn

Grandir
AG
SRS (Alice)
SRS Assoc
AFIF
TS-AGAT
TS-et vous
HPP EU

germany

 

Germany

Achon
WMS   
Skeletal  
TS
Prader W
Achon
Adrenal Syndrome CAH 

SRS (RSS

GHD
ORD

greek-flag

 

Greece
AG

AG  

 

 

Greenland
 

HPP

guatemala

 

Guatemala
  AG
AG2

 

Holland
TS
FD
Achon
 

 

Hungary
  TS
Achon

 

Iceland
 

HPP

 

India
ORD-diabetes

AG

ireland

 

Ireland
TS
Other Rare
ACH 
Addisons 
CAH
CAH  
SOD

GHD
Achon 
israel sm

 

Israel
 AG AG
italy

 

Italy
SRS 
GHD
TS 
PAN
SGA

ORD 
General 
ACHON
SOD
SRS(1)
SRS(2)
AFADOC:LinkedIn Facebook YouTube Twitter
FD
japan

 

Japan

TSS-Growth 
Pituitary    
SRS/RSS

ASrid-GAD
Achon 
ASrid-GAD (Facebook)
ASrid-GAD (Twitter)
ASrid-GAD (Instagram)

 

Kenya
 

All Growth

Achon 

latvia1

 

Latvia
General  

 

Lebanon
 Please contact if you know of a support group for this area.   

 

Lithuania
 TS   TS 
mascedonia

 

Macedonia
  GH

Malaysia
Rare  
Mexico
Rare

TS  

Achon 

netherlands-flag11

 

Netherlands

ORD  
AI
WMS 
TS  
All Growth
Achon 
GHD  
All GHD groups

 
new_zealand

 

New Zealand

 ACH

CAH-1

CAH-2

 RSS/SGA
Norway

 

Norway

WMS
TS
Achon  

SGA
HPP
pakistan-flag

 

Pakistan
  CAH

 

 
Philippines
  Achon
poland

 

Poland
TS
Achon 
AG  
TS   
RSS/SRS
portugal

 

Portugal
Achon / Bone Dysplasia  
RomaniaFlag_0

 

Romania
Prader Willi  
russian_flag

 

Russia
All    
Serbian-Flag

 

Serbia
GHD 
Rare
AG  
GEN

 

Scotland
AG RSS 
slovakia

 

Slovakia

WMS 1
WMS 2

Achon 

 
Slovenia
ORD  
THY
 

 

South America
 
Rare Diseases in Ibero-America   

south-african-flag-large

South Africa
Rare
Pituitary Community
 

 

South Korea
   
spain

 

Spain
TS 
ACHON #1  Achon#2 
AG
Addison
FD  
RSS SRS (facebook) 
Addison
FD

 

Sweden

NS
AG
Achon 

Prader W

SGA
HPP
Switzerland-flag

 

Switzerland
NS
TS
Achon  
 

 

Taiwan
RSS  

 

Uganda
   AG

 

United Kingdom

ACH
FD
Restricted Growth
All Growth  
European Skeletal

Adrenal Hyperp

FD
SOD
 

 

United States of America
AI
Achon 
Achon Intl LPOTW
Bloom Syn
CAH
GHD children
GHD adults
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  
IGFD  
ISS 
MAS  
Noonan Syn
NS
ONH/ SOD  
PAN  
RSS-english
RSS-SRS spanish   
SGA  
SOD children
SOD/ONH Adults  
Temple Syn 
THY  
TS  
TSS 
TSGA  
wapo logo
Global Partner World Alliance of Pituitary Organizations  

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