Congenital Adrenal Hyperplasia Links & Resources
Links and Resources
1. Adrenal Hyperplasia Network
This UK website offers information and support for people of all ages, especially adults and teenagers with CAH. The site provides a very good, free information booklet for adults with CAH written by leading UK endocrinologist Dr Gerald Conway in 1999.
2. Congenital Adrenal Hyperplasia Support Group of Australia (CAHGSA)
Holds the honour as the first CAH support group in the world. The CAHGSA site offers some excellent information for Australasian families along with resources and support.
3. CARES Foundation
This US website is an excellent source of information about many aspects of diagnosis, and treatment on CAH, including up-to-date research and online quarterly newsletters.
4. Book: Your Child with Congenital Adrenal Hyperplasia
Written by Professor Garry Warne (paediatric endocrinologist, Royal Children’s Hospital, Melbourne, Australia) and first published in 1980 for parents of CAH-affected children, an updated version of this classic book may be downloaded free. The graphics and text are concise and well-written. Hard copies are available for purchase from CAHNZ Trust.
5. Book: Congenital Adrenal Hyperplasia – A Parents’ Guide
US medical advisors Drs S. Rivkees and C. Hsu’s excellent resource is a must for every family affected with CAH. It is well written with easy-to-understand explanations, graphs and charts.
6. CLIMB: Living with CAH
This website is a subgroup of the UK support group CLIMB (Children Living with Inherited Metabolic Diseases) and contains excellent information, including a good facts FAQs page.
7. About Kids Health
This site provides a general guide with good graphics and simple descriptions for many childhood conditions, including CAH.
Homepage – homepage with an overview of the site, including links to the very useful How the Body Works animated, interactive atlas of child anatomy and physiology.
CAH page – page specific to CAH from the How the Body Works section.
8. MAGIC Foundation
A US organisation of more than 25,000 families whose children have medical conditions affecting their growth, including CAH. This site offers a guideline for Emergency Care While Taking Hydrocortisone. (Note: we stress this is a guide only. Every parent/individual should understand the emergency procedures provided by their/their child’s physician for emergency care.)
8. New Zealand Addisons Network (NZAN)
Provides information and support for people with Addison’s disease, a condition that also sits under the umbrella of ‘adrenal insufficiency’. The information and guidelines offered on this site are often very helpful for adults managing CAH.
9. Intersex Trust Aotearoa New Zealand (ITANZ)
A New Zealand registered charitable trust providing information/education and training for organisations and professionals who provide services to intersex people and their families.