Grupo de Padres PKU was started by 3 mothers of children with PKU in 1992 to provide support to other parents. At that time, there was no information in Spanish in our country, so we started to translate many articles on PKU into Spanish. Then we made a mailing list of all PKU children and parents in Argentina and contacted each one. We have organized some meetings alone, and some with the help of doctors. We bought low protein foods (there is none here) and distributed it to families. We contact many countries to get information and to learn about other doctors and other support groups. We wrote and published a cookbook in Spanish, "Cocinemos con Pocas Proteinas." We used to have a newsletter that helped many families.

For more information and to purchase the cookbook, contact:

The New South Wales PKU Association promotes awareness of PKU by:

• Providing information to individuals, care takers and support to families affected by PKU
• Actively re-establishing contact with adults who have PKU and do not attend The Adult Metabolic Clinic or who may be off diet
• Lobbying Government bodies where appropriate

The Committee is as follows:

Our main objectives are the following:

• Parent/patient support. To provide information and support for parents and patients with PKU and galactosemia (and a few others).
• Improve Cooperation. To improve the cooperation with the medical community and also within the medical community for understanding of inherited diseases of inborn metabolic disorders.
• Education. To educate parents and juveniles (10-15 years of age) about the basic principles of diet. To distribute information on PKU and allied disorders to parents, patients, interested people and many organizations and institutions in the medical, dietetic and social fields.
• Support pregnant women with PKU. To support women with PKU and their partners on topics related to pregnancy and diet during pregnancy.

The main activities of OEGAST are:

• Annual meetings in spring with lectures held by specialists on various topics. Exhibitions of low protein products.
• Working groups and cooking courses in different parts of the country twice a year.
• Regional meetings on an informal basis—summer picnic, cookie exchange around Christmas.
• Newsletter which is sent to all members twice a year.
• Dietetic holidays for children from 10-16 for two weeks with lots of sports and entertainment to improve or learn self-management of the PKU or galactosemia diet.

We also provide a food composition table, regular low protein recipes and with the help of DIG PKU (the German sister organization) interesting and informative scientific brochures and leaflets on various aspects of PKU.

• Parent support. To provide a forum where parents and professionals can share knowledge and experience.
• Medical community support. To foster in the Canadian medical community a greater awareness and understanding of the detection, treatment and control of metabolic diseases.
• Research. To promote research into improving early diagnosis, discovering new and more effective treatments and finding a cure.
• Public education. To educate the public about metabolic diseases.
• Centralization of information. To create a central pool of information for each metabolic disease of interest to our members.
• Improved services. To work with government to improve services to families of children with special needs.

Our organization supports such metabolic disorders as PKU, galactosemia, glycogen storage disorders, cystinosis, urea cycle disorders, Leigh’s disease, hereditary tyrosinemia, and organic acidemias. Annual membership is $20.00 Canadian. This includes all membership privileges and a newsletter subscription.

For more information, contact:

This is a non-profit organization with 20 member countries in Europe and Turkey. It was established in 1986 as an umbrella organization for all national societies, registered under Belgian Law and recognized as a "non-governmental organization" by the European Union. It is supported by a scientific committee composed of professionals in the field.

The main objectives of the group are:

• To exchange scientific results and clinical experiences on detection, treatment and control of PKU and allied disorders within the European countries.


• To improve cooperation with the medical community for greater awareness and understanding of phenylketonuria and allied disorders.


• To promote research in early diagnosis and effective treatment of inherited disorders of amino acid metabolism.


• To cooperate with governments and relevant institutions for better services to families with affected children.


• To provide formulas and low protein food under the same conditions and concurring regulations in all European countries.

Our main activities are:

• Annual meetings with lectures given by specialists, working groups on various topics, cookery demonstrations and exhibitions of formulas and low protein foods.


• A newsletter is published twice each year.


• Other information is provided to members.

For more information, contact:

This non-profit organization was established in 1975 for parents of children who have one of the inherited disorders of amino acid metabolism and for adolescent and adult patients. Currently we have about 1200 members. Annual membership fee is DM 36. (Includes all membership privileges.)

The main objectives of the group are:

• To provide information and support for parents and patients with phenylketonuria and allied disorders of amino acid metabolism.

• To improve the cooperation within the medical community for awareness and understanding of inherited diseases of amino acid metabolism.
• To educate parents about the basic principles of diet (mainly the PKU diet).
• To support women with PKU and their spouse on topics related to pregnancy and diet during pregnancy.
• To distribute information on PKU and allied disorders to parents, patients and numerous institutions in the medical, dietetic and social fields.

Our main activities are the following:

• Annual meetings with lectures given by specialists, working groups on various topics, cookery demonstrations and exhibitions of formulas and low protein products.
• Meetings of regional groups (picnics, family weekends) with lectures given by specialists, discussions, baking and cooking courses and food/formula exhibitions.
• A newsletter is sent out to all members twice a year.
• Scientific brochures and leaflets on various aspects of PKU and allied disorders, food composition tables and low protein recipes are available through the organization.

For more information, contact:

For more information, contact:

Our main goals & activities are:

• To support parents with PKU children in their contacts with clinics and to help them understand what it means to have PKU.
• To keep updated on PKU research.
• Newsletter which comes out four times a year.
• Family weekend. We organize this each year. We have fun, exchange experiences, etc.
• We have plans for a weekend for teenagers with PKU.

For more information, contact:

Founded in 1988, our group has approximately 130 members (including people with PKU, parents and supporters). As of 1965, all newborns in Switzerland are being screened for PKU. Since then, about 102 children have been diagnosed with PKU (about four babies each year).

Our main goals and activities:

• Represent PKU whenever necessary in the public (government, etc.)
• Support for purchasing special dietary food (import from other countries, etc.)
• Yearly newsletter
• Contacts to the food industry to make them aware of PKU (target: indicate amount of phe on package label)
• Support for the PKU teenager
• Organization of cooking courses
• Inform members about PKU events in other countries
• Help Desk for questions regarding insurance
• Negotiations with insurance companies and health departments
• Organization of summer and winter camps for kids
• Hotline regarding questions (cooking, illness, etc.)

Yearly subscriber fee per family: Fr. 70 (US $50)

For more information, contact: