The EGS was founded in 1997 as a direct result of the Fulda conference on Galactosaemia in 1993. During the Fulda meeting reprenstatives of national patient organisations met for the first time.
During following meetings it was decided to join forces and to form an umbrella cooperation. Main reason: we found a lot of differences across Europe:
- Differences in screening and speed of diagnosis
- Differences in perceived seriousness of the disease
- Differences in treatment and monitoring (even within a country)
- Differences in diets
- Differences in level of knowledge of doctors, dieticians, endocrinologists, …
- Differences between patients (cognitive & physical)
For parents it was (is) difficult to understand that there were/are no scientific or logical explanations for differences in speed of diagnosis, cognitive and physical development of patients, treatment, monitoring or diets across Europe.
The good news was that we also saw a lot of similarities across Europe as well. In each country we find a (small) number of highly motivated professionals to help parents and patients! We are very happy with the many new facts since the 1st International Symposium here in Fulda (1993) although the main causes of the occurring problems are still not clear.
Also the biggest worries amongst parents and patients are similar across Europe:
- Speed of diagnoses of Galactosaemia
- Quality of life and social skills
- Speech development
- Treatment and monitoring of adults
- Calcium intake and Mineral Bone Density
- Hormones and fertility (girls)
Our main aim is to share information, to promote awareness of and to stimulate research into Galactosaemia within Europe.
Our aims and objectives in detail are
- to promote the educational and social welfare of persons affected by Galactosaemia,
- to promote awareness of the disease within the medical and teaching professions and within the food and pharmaceutical industries,
- to stimulate scientific and medical research into Galactosaemia,
- to co-ordinate European research into and studies of Galactosaemia,
- to give and to distribute information to its members and other interested parties,
- to install a data bank and a library with all studies and information about Galactosaemia, with national food lists, national newsletters and similar documentation,
- to give information to affected persons travelling in a European country (food lists, addresses for emergency and similar information),
- to co-ordinate methods of treatment in Europe,
- to lobby for changes in European law which affect the galactosaemic patient and the careers of the galactosaemic patient,
- to lobby for better disclosure in the labeling of foods and pharmaceuticals,
- to organise meetings,
- to promote the establishment of national societies,
- to organize holiday-exchanges for affected children,
- to undertake projects and co-operate in undertakings that promote the aims of the society and
- to undertake activities in support of the aims of its members and the interest of the society as a whole.
To reach the aims and goals the EGS and to facilitate the cooperation between international Galactosaemia patient and professional networks we organize a meeting in one of the member countries every year. Representatives from the parent associations, representatives from the professional European Galactosemia Network and specialists from the national Medical Committees on Galactosaemia are invited.
To avoid long travelling time for attendants the meetinglocation is always near an international airport.
The meeting on Friday is for EGS members only: The General meeting and sharing experiences, best practices and most important activities of the respective countries are part of the agenda.
Friday-evening: meet and greet and diner with specialists arriving for the Saturday-meeting.
During the ‘scientific part’ of the meeting on Saturday the professionals share their activities, new insights and future plans amongst their colleagues and the parents. If applicable, action points are defined for future follow-up. (Fundraising, contacting other professionals, contacting individual patients or groups of patients with a specific goal).
On Sunday morning a cultural trip is offered to all who’s plane is not left yet.
C/o Jeroen van Kempen
NL – 5691 RJ Son
Tel.: +31 499 477509
Mob.: +31 6 10 21 69 72
The Society is composed of the following categories of members:
- Full members:
Full members are national organisations. Their aims must correspond to the aims of the EGS.
- Associate members:
Representatives of countries not having a national organisation or those organisations, which do not pay a membership fee.
- Honorary members:
Individuals or organisations nominated by the general meeting.