What is the ESPKUThe European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (or E.S.PKU) is the umbrella organisation of about 23 national and regional associations from 23 countries established by parents.
Since 1987, representatives of most European countries have come together to improve the quality of life of persons afflicted.
The rather short history of the E.S.PKU already shows that the quality has improved considerably.
The E.S.PKU makes a difference between Legal members, Associate members and Honorary members.
Legal members are national or regional organisations. Their aims must correspond to the aims of the E.S.PKU.
Associate members are those organisations, which do not pay a membership fee. And Honorary members are individuals or organisations nominated by the general meeting. The E.S.PKU itself has an Executive board of four members. Next to the executive board there is also a Scientific Advisory Committee or SAC. This a group of professionals who are confronted with PKU in their daily work. They keep the E.S.PKU informed about the latest scientific developments on PKU and provide advice.
Goals of the ESPKU
Despite some improvement in the treatment in about the last decade, the essential aims of the E.S.PKU still remain the same as at the time of establishment:
- To promote the educational and social welfare of PKU's and persons with allied disorders
- To stimulate scientific and medical research in PKU
- To undertake all activities that can promote the aims, for example:
1. to give and to distribute information to the members
2. to organize meetings
3. to edit perdiodicals
4. to promote the establishment of national societies.
As so far more or less unsolved problem is the comphresensive care for adult PKU's. In addition, even nowadays, PKU's are not in all European countries screened and treated in accordance with the recommendations on 'Diagnosis and management of Phenylketonuria', as published in European PKU news, volume 12, spring/summer 1998.
Therefore the continuing aim of the E.S.PKU must be to ensure the best possible treatment and quality of life for alle persons afflicted irrespective of their age and of geographical borders. The E.S.PKU looks forward to receive support on reaching these goals.
E.S.PKU Executive Bureau, October 2001-2008.
Activities of the ESPKU
In the first ten years of its existence, the E.S.PKU encouraged the establishment of PKU societies in numerous European Countries.
Therefore the E.S.PKU had to convince governmental authorities and insurance companies that the treament is essential for all persons afflicted, and initiated the development of new products - just to mention a very few examples of succesful work.
From the establishment in 1987 onwards, the annual E.S.PKU meetings of parents and professionals -organized by one of the Legal Members in his home country- showed their benefits at many levels. Doctors and dietitians compare the best practice of treatment; parents talk about their children and adults PKU's discuss their life styles. Those are just some examples of our activities.
One to two times a year the E.S.PKU edits a periodical called the European PKU News. Furthermore information on special topics is published from time to time.
In addition most of the E.S.PKU Legal Members offer in their countries as regular services:
- information in their native language
- cooperation with the medical community
- meetings, picnics, family weekends
- cookery demonstrations
- food exhibitions
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