Please contact us if you know of a website that would be of use to our members.

PLEASE NOTE: Whilst the MDDA has reviewed the following websites to provide members with good advice, we do not necessarily endorse all of the information contained in these sites and cannot be held responsible for changes to the sites that do not reflect MDDA's beliefs.

PKU HANDBOOK AUSTRALIA
The PKU Handbook (.pdf download)

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 Australiawith members in all states of Australia. This website is intended to help link the NSW PKU Assocition to you wherever you are in Australia. Providing news and events as they occur that relate to people with PKU.
	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

Children Living with Inherited Metabolic Diseases - This is a group based in the United Kingdom. They publish an excellent newsletter (three issues each year) and provide information, support and education on over 550 metabolic diseases.

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.

MEDICAL OR PROFESSIONAL RESOURCES

Genetics Education Program of New South Wales - Offers a good overview of all things genetic and some excellent fact sheets for those wanting to understand the inheritance aspects of their particular condition.

Health Insite - A Commonweatlh 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.

Neonatology on the Web - A very good site intended for medical professionals, but offers a succinct and excellent overview of metabolic disease in plainer English than usual. Written a few years ago now, but well worth the visit.

OMMBID - The Online Molecular and Metabolic Bases of Inherited Disorders seeks to describe the current state of knowledge in inherited disorders, from a historical, clinical, biochemical and genetic point of view. The summary of each of its 255 chapters is available for free, whereas full text access of all chapters can be obtained through many universities or organizations.

Online Medelian Inheritance in Man - Again intended for those medically minded, but offers a good searchable database that is likely to be useful for those with rarer conditions. Offers a thorough outline of case studies and findings.

PubMed - An absolute must for anyone seeking information on practically any medical condition. PubMed is widely used and recommended by medical health professionals, it contains (usually) abstracts published in peer-reviewed journals, relating to any conceivable medical condition.

USDA Agricultural Research Nutrient Data base - A comprehensive searchable data base for just about any conceivable food - you get a full breakdown of not only protein, calories, fat and the usual but also amino acid content, fatty acids and much more! This is a United States resource and as always, please do check with your dietitian before acting on any interpretations you form from the information on this site.