Swiss association for people with Phenylketonuria and other inborn errors of Protein Metabolism
No meat, no fish, and no dairy products, but also no breakfast rolls, no birthday cake, and no crisps – your whole life long. That is how people with the condition known as phenylketonuria (PKU) have to live.
PKU is an inherited genetic disorder that occurs in about one in 8000 newborn babies. Phenylalanine, an amino acid (protein building block), in the diet is not broken down but builds up to dangerously high levels in the blood. The result is severe disability. Children with PKU therefore have to follow a special low protein diet from birth onwards – and only in this way can they develop normally.
Swiss PKU is dedicated to helping people with PKU and other inborn errors of protein metabolism.
WELCOME TO SWISS PKU!
Swiss PKU is the Swiss association for people with phenylketonuria (PKU) and inborn errors of metabolims treated with restricted protein intake. Swiss PKU (originally CHIP) was founded by committed parents in September 1988 and currently has more than 130 members.
We cordially invite you to explore our website and browse through our information about PKU, our exchange platform and events, and use our numerous links to PKU associations and companies that offer products suitable for people with PKU.
We look forward to seeing you!
Your Swiss PKU
- To educate people about PKU
- To connect people with PKU and their families with other people affected by PKU
- To represent the interests and concerns of people living with PKU
- To promote the exchange of information
- To promote collaboration with all institutions involved with PKU and other congenital metabolic disorders
THESE ARE OUR POLITICAL DEMANDS
- Uniform reimbursement throughout Switzerland (equal rights)
- The costs of essential foods have to be covered by the basic health insurance after the age of 20, as envisaged by the federal law on health insurance (implementation of existing law)
- Trade barriers for special foods and dietary supplements have to be broken down (improvement of a financially demanding situation)
THE EXECUTIVE BOARD
All activities of Swiss PKU are conducted on a voluntary basis.
This important association crucially depends on the dedication and commitment of people living with PKU and their family members.
WHAT IS SWISS PKU?
GOALS, TASKS AND FIELDS OF ACTIVITY
The purpose of the association is the promotion of all measures that contribute to the improvement in the living situation and quality of life of the persons with PKU and their family members. The goals, tasks and examples of activities of Swiss PKU thus include the following:
- the creation of optimal general conditions that are indispensable to enabling the persons with PKU to live independently
- advising on and fostering of skills and expertise of the persons with PKU, parents and interested parties
- provision of information about new products, changes and innovations in the areas of food, insurance and medicine
- maintenance of contact as well as the exchange of information and experience among persons with PKU, their family members and interested parties via events (e.g. children’s camp, cookery courses, seminars on various subjects, etc.)
- fighting for laws that improve the quality of life of persons with PKU and their family members.
- the introduction of clear declarations on all foodstuffs available on the market
- making the import of foreign dietary products easier
- provision of information on leisure options and holiday destinations with a targeted low-protein diet
- strengthening the position of persons with PKU and their organisations in society via coordination, collaboration and the exchange of information
- establishing and maintaining contact with national and international organisations that pursue similar goals
- educating the general public about PKU, low-phenylalanine diets and successful treatment strategies
- educating the authorities, specialists, health insurance companies, disability insurance companies and other insurance companies about the difficulties and costs with regard to persons with PKU
- conducting active informational and media work
GOVERNING BODIES OF THE ASSOCIATION
A close collaboration exists among the treatment centres, physicians, dieticians and social workers and Swiss PKU. The partner organisations of Swiss PKU include the advisory and information service Oase, APEP, DIG-PKU and OEGAST as well as E.S.PKU. Beyond that, the association is striving to expand its contact network on a continuous basis.
The financial requirements of Swiss PKU are covered by membership fees, donations and advertising in the ‘Phe Tipp’ newsletter. Swiss PKU guarantees the economical, efficient and transparent handling of its funds.
The statutes are available for download here.
THE SWISS PKU OFFICE
Swiss Association for Phenylketonuria and Other Inborn Errors of Protein metabolism
9108 Gonten, Switzerland
Phone: +41 71 794 11 97 E-mail: firstname.lastname@example.org
MEDICAL ADVISORY COMMITTEE
Dr. med. Diana Ballhausen, CHUV, Lausanne
Prof. Dr. med. Matthias Baumgartner, Kinderspital Zürich
Prof. Dr. med. Johannes Häberle, Kinderspital Zürich
Dr. med. Dr. sc. nat. Michel Hochuli, UniversitätsSpital Zurich
Dr. med. Ilse Kern, Universitätsspital Genf
Dr. med. Jean-Marc Nuoffer, Inselspital Bern