Health Insite - A Commonwealth Government of Australia website providing a very good overview of conditions, diseases, support groups, medical facilities and more. Very user friendly with an excellent search capacity.
Nutrition4me - This site is designed for Australians with an inborn error of metabolism (IEM) and their carers. There are links to many articles and resources for parents/carers, recipies and includes an online order facility for a wide range of low protein products.
|SELF-HELP OR FAMILY-SUPPORT GROUPS - Australia and New Zealand|
|Association of Genetic Support of Australasia - Based in New South Wales, AGSA facilitates support for those affected directly or indirectly by genetic conditions throughout Australasia.|
Genetic Support Network Victoria - A newly formed group whose mission is to facilitate a network committed to promoting the interests and well-being of people affected by genetic conditions.
|The NSW PKU Association group - Based in and around Sydney, NSW Australia. This website is intended to help link the NSW PKU Association to you by providing news and events as they occur that relate to people with PKU in NSW.|
|PKUTREE - “Wouldn’t it be nice to chat with other pku families online!”|
The pku website and discussion forum was created to offer a sense of connection.
An Australian website developed by parents of children with PKU
PKU News for South Aussies - Offers a range of comprehensive fact sheets, guides, explanations - most reprinted from medical or other well-regarded organisations. An excellent source of information for families with PKU anywhere in Australia.
SELF-HELP OR FAMILY-SUPPORT GROUPS - International
National Coalition for PKU and Allied Disorders - Based in the USA, this group has a strong history in lobbying and are heavily involved in conference organisation in the United States to bring together affected families and health professionals. Check out their website - a great read with lots of up to date information.
National Urea Cycle Disorder Foundation - This group is based in America and their main focus is supporting and educating families affected by UCD. Their website is excellent and they have had some good wins in securing funding for gene therapy research and trials.
| ||Organic Acidemia Association - This is an American-based group and an excellent resource of information for anyone who has an Organic Acidemia (eg MMA, PA, GA, 3-MCC, IVA). This group also offers an excellent email list serv. Very helpful for those with rarer conditions who may need to contact others outside Australia to find families with disorders in common.|
| ||PKU Adults - A Canadian based group offering a comprehensive source of information for adults with PKU world-wide. This site aims to offer support and guidance for adults with PKU, especially for those making the difficult decision to return to low pro diet.|