Helpful Links
You are not alone - and we are not alone! There are so many helpful organizations and support communities available for patients with adrenal diseases and their caregivers, loved ones, and medical teams.
Support Organizations
Adrenal disease affects all aspects of the patient’s life. For whole-life care, we recommend connecting with the following organizations:
Medical Resources
American Association of Clinical Endocrinologists (AACE)
Jacksonville, Florida
Find an Endocrinologist: aace.com/find-an-endo
American Association of Endocrine Surgeons (AAES)
Los Angeles, California
Patient Education website: EndocrineDiseases.org
The Endocrine Society
Bethesda, Maryland
The public education affiliate of the Endocrine Society: Endocrine.org/patient-engagement
Information and fact sheets on various endocrine disorders: Adrenal Glands Questions & Answers
Mayo Clinic
Rochester, Minnesota
Health tools, resources, and comprehensive information on diseases and conditions: MayoClinic.org/patient-visitor-guide
USA – Other Adrenal Disease Groups and Resources
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For individuals with X-linked adrenoleukodystrophy (ALD)
aldconnect.org -
Advancing Treatments for Adrenocortical Carcinoma c/o TGen Foundation
adrenalcancer.org -
Clinton Township, Michigan
autoimmune.org -
Falls Church, VA
thyroid.org -
Autoimmune Polyglandular Syndrome Type 1, also known as APECED, Autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy.
APStype1.org -
Congenital Adrenal Hyperplasia support
Millburn, New Jersey
caresfoundation.org -
Center for Adrenal Disorders at
Brigham and Women’s Hospital
Boston, Massachusetts
Center for Adrenal Disorders -
Boston, Massachusetts
csrf.net -
Clarksburg, MD
Improving Mental Health in the Community
giveanhour.org -
Supporting Children with Rare Diseases
Oak Park Illinois
magicfoundation.orgJoin their Facebook page for parents: facebook.com/TheMAGICFoundation
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Information and professional medical support, library & specialty medical forums
medhelp.org -
Danbury, CT
rarediseases.org -
A patient-run group for people living with pheochromocytoma and paraganglioma.
Kokomo, Indiana
pheopara.org -
Thousand Oaks, California
pituitary.org -
Phoenix, Arizona
primaryaldosteronism.org -
Slidell, Louisiana
aldfoundation.org -
The EPIC foundation provides support, advocacy, education and tools to people who are affected by chronic illness.
epictogether.org -
Provides an excellent summary of all known genetic diseases with literature citations.
https://www.ncbi.nlm.nih.gov/omim -
The Agency for Healthcare Research & Quality (AHRQ)
Lead Federal agency charged with improving the quality, safety, efficiency, and effectiveness of health care for all Americans.
ahrq.gov -
US National Institute of Health – Library of Medicine
nlm.nih.gov -
Bethesda, MD
rarediseases.info.nih.gov -
Boston, MA
vhl.org
International Adrenal Disease Groups & Resources
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Australian Addison’s Disease Association Inc.
Australia
addisons.org.au -
Canadian Organization for Rare Disorders
Coaldale, Alberta Canada
raredisorders.ca
The Canadian Addison Society
2 Palace Arch Drive
Etobicoke, Ontario M9A 2S1 Canada
addisonsociety.ca
Thyroid Federation International
Kingston, ON Canada
hyroid-fed.org -
Morbus Addison Foreningen Denmark
Randbøl, Denmark
addison.dk -
Association “SURRENALES”
French Adrenal Diseases Organization
Addison’s disease, Cushings’ CAH and other related disorders
Corbeil-Essonnes, France
surrenales.com -
Netzwerk Hypophysen- und Nebennierenerkrankungen e.V.
German Pituitary and Adrenal Network
Erlangen, Germany
glandula-online.de -
Associazione Italiana Pazienti Addison (AIPAd)
Italian Association for Addison patients
Piazzale da Vinci, 8
30172 Mestre VE Italy
e-mail: antocampo@tin.it
039 6829572 (ore serali) – Antonella
e-mail: michela.aipa@alice.it
041 989586 – Michela
morbodiaddison.org -
Dutch Adrenal Patients Society - NVACP
Nederlandse Vereniging voor Addison en Cushing Patiënten (NVACP)
Addison’s disease, Cushing syndrome, CAH/AGS, Conn’s Syndrome
Soest, The Netherlands
bijniervereniging-nvacp.nlDutch website of BijnierNET /AdrenalNET
bijnierNET.NL -
Morbus Addison Forening
Postboks 152
4302 Sandnes, Norway
Telephone: +47 880 05 015
addison.no
email: epost@addison.no -
Stowarzyszenie na rzecz osób
z chorobą Addisona i niedoczynnością nadnerczy
chorobaaddisona.org.pl -
Swedish Addison Association
addison.se -
Addisonʼs Disease Self Help Group (UK)
addisonsdisease.org.uk
PO Box 1083
Guildford, SURREY GU1 9HX
United Kingdom
President: Mrs Deana Kenward
info@addisons.org.uk
ALEX TLC
45 Peckham High Street
London
SE15 5EB
alextlc.org
info@alextlc.org
If you want to speak with someone about your medical condition, or if you have received a diagnosis of ALD or AMN, please call our Advice Line on 020 7701 4388 (London, England)
CAH UK Support Group – United Kingdom
cah.org.uk
Metabolic Support UK, Inherited Metabolic Disorders
climb.org.uk
The Pituitary Foundation
Bristol, UK
pituitary.org.uk
Other International Resources
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International
globalgenes.org -
Adrenal Cancer
International
LetsCureACC.com -
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Crisis care information in translations.
Books and other resources
Second Chances: True Stories of Living with Addison’s Disease
Compiled and edited by Carol McKay.
Published by PotHole Press, 2012.
Disaster Preparedness
If we must face natural disasters and other calamities, it is best to do so prepared. Download our PDFs to use as a checklist while you prepare, and click here for more detailed adrenal insufficiency specific disaster preparedness guidelines.