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Report on the meeting held on the 19th of January 2002 by seven European juvenile arthritis associations
Judith CYPEL
Presentation of each association by their representatives
Discussion about the project of a European juvenile arthritis organization
Mr Lascar, the President of Kourir, the French association, started the session with an opening speech to welcome the people who attended the meeting : Annemie Herssens from Belgium, Helle Rasmussen from Denmark, Claudia Grave from Germany, Caroline and Tony Cox from Great Britain, Hanny Weustenraad and Tineke Puister from the Netherlands, Dr Gomes and Carla Martins from Portugal.
President Lascar also thanked Axa as a strong and efficient supporter of Kourir.
He then went on to explain the main aims of that working day : to hear of the way each association functions and of the problems they might have ; to exchange information ; to discuss the possibility of getting united and acting together ; to create a European juvenile arthritis organization through which they could voice their common concerns in a forceful way –an organization in which each association would remain independent.
Presentation of each association by their representatives
The Portuguese association was created six years ago as a charity (private association of social solidarity) by a group of patients, parents and rheumatologists. It is a patients' association which now has a membership of 250. At least 1000 children suffer from juvenile arthritis in Portugal.
The association produces a range of booklets to inform people (either children, parents or teachers) about the disease and the treatments available, as well as about the laws which are meant to protect children with diseases.
A one-day meeting is held every year so that children can meet and stop feeling isolated as they can see that they are not the only ones suffering from juvenile arthritis. In 2001, 120 people attended this meeting. The association also organizes an educative meeting, with talks and discussions, every other year.
Funds are raised through parents, doctors, labs. etc.
Apart from tax exemption, no financial help is provided by the portuguese government.
The major problem of the association is the lack of associative spirit among portuguese parents and families. Not many people get involved in it and only 5 or 6 people do all the work.
We would be very interested in creating a European association in order to share experience on education and fund raising.
[As for education, Claudia Grave from Germany explained that the German association has a good education programme, made by rheumatologists, which could be easily adapted by other associations.)
The German Rheumatism League which was set up by rheumatologists, has a membership of 237 000 and is the largest voluntary association of Germany. Every year, a national day is dedicated to a rheumatic disease ; juvenile arthritis' day was in 2000. In Germany, about 15 000 children suffer from juvenile arthritis.
Within the German Rheumatism League 1980 parents groups were founded by parents for parents.
On the national level, these groups are run by a committee whose objectives are to inform people about the disease, to organize meetings, and to make regular contacts with professionals as well as with other associations of disabled children.
As for information, the association provides it through newsletters, advisory work carried out over the phone by specialized parents, and information sessions are regularly held in hospitals.
On the local level, there are about 200 groups whose aims are to give support to the families through distribution of information materials, telephone contacts, regular meetings, family weekends, and education programmes with different sessions according to the groups of people concerned (as parents, children, and teenagers don't have the same needs).
The parents groups get funds from sponsors, from the national League, and
from the federal states on specific projects. They are not involved in medical
research as there already exists a national organization dedicated to fund
raising to help research.
They would be very much interested in talking about the possibility for founding a European network in order to share experience.
The Belgian (Flemish) association was created in 1993 by rheumatologists and parents, and is part of the Belgian Rheumatologic League. It has a membership of 120 families. 3 000 children suffer from arthritis in Belgium.
The association is run by one volunteer person only (Annemie Herssens herself, who is a nurse), as parents seem to find it hard to get involved. Two meetings are held every year. One provides people with medical information, and the other one is dedicated to conferences and leisure activities.
The association gets no subsidies and raises funds through sponsoring.
Annemie Herssens would be very much interested in creating a European association in order to share information.
[Regarding the sharing of information, Norma Neumann from France suggested that a newsletter might be issued by the European association when it is created.]
Kourir is a parents’ association which was created in 1992. It is run by a committee of 15 members who hold a meeting every month. It has a membership of 700 families. Officially, it is estimated that 5 to 10000 children suffer from juvenile arthritis in France.
The budget of the association varies from one year to the next as it depends on funding. In 2001, it amounted to 42 800 euros.
The association has three main objectives. The first one is to inform parents about the disease, and professionals (rheumatologists and pediatricians) about specificities of the disease or effects of the treatments they might not be conscious of. Information is provided through a quarterly newsletter, and a website which presents various kinds of information, from practical information to recent medical texts. The association also publishes books on juvenile arthritis meant for teachers, or for young children; the practical parts were written by parents and the medical parts by doctors. These books are sponsored by Axa. Finally, in order to share information, the association joins in conferences all over Europe.
The association also aims at promoting medical research by joining in the funding of specific projects (such as an epidemiologic study, research on the growth hormone or on DNA). Sponsors and parents alike are very keen on donating to research. Besides, in 2001, the association created an award given by a scientific committee to people whose research is assessed as stimulating.
The third aim of the association is to help children and parents deal with practical problems.
They would be very much interested in creating a European association in order to share experience on education and to lobby the European Commission in order to get funds.
The British association was founded in 1990 by Caroline Cox. It has a membership of 1800, most of whom are parents or grandparents; some professionnals have joined the association, as well as teachers.
The association is a registered charity: it benefits from tax exemption but gets no subsidies. It is mainly funded by donations and sponsorship.
The main missions of the association are to give support to parents, to inform professionals about the disease, and to make regular contacts between parents and professionals so that they can learn from each other.
Specific projects (as the smile project for dental hygiene, or the adolescent project regarding the issue of children entering teenage) are carried out by a committee and subcommittees. General support and daily issues are dealt with by family contacts scattered all over Britain. The association also issues a newsletter with contributions from professionals, parents, and children alike. A family support weekend is organized once a year, with activities for everyone in the family: sports for disabled children, and also activities for all siblings (brothers and sisters feeling frustrated as they feel neglected). Besides, the children regularly go for outings together in order to keep contacts with one another. They also use the website of the association to get information and to chat.
Mr and Mrs Cox would be interested in sharing information, starting a common website, and consolidating efforts to help the children.
The Dutch association was created in 1998 and has a membership of 250. In the Netherlands, 2000 children suffer from arthritis.
Funding is raised through donations on arthritis day, subscriptions from families, and sponsoring. It finances information campaigns, research, and adapted holidays, and is also used to help needy families.
The main aims of the association are to inform people about the disease, and to support all families. Information is provided through booklets, newsletters, and media coverage. A meeting is organized twice a year for parents; professionals are also invited. Two weekends are organized every year for the youngsters: one for children, one for teenagers. In addition, the decision has just been made to arrange a family day.
The association also aims at creating contacts with other associations of children suffering from chronic diseases.
[Marcel Lascar from France put forward the idea of a European day for consciousness and fund raising.]
From 700 to 800 Danish children suffer from juvenile arthritis. 60 to 70 new cases are registered every year. In Denmark, it is known for a fact that anyone can get information from associations. Hence, professionals tell parents about the parents’ association of children with arthritis, and parents become members.
The Danish association is an independent association. It has a membership of 700 (500 families and 200 professionals, teachers, etc.). Once a year, an information day is held for all new families.
The annual budget amounts to 30 000 euros. The funds come from members, from the association of adults with arthritis (part of the Danish Rheumatism Association), from state football pools and lottery, and from foundations.
The association aims at informing people about the different types of disease, and the various treatments, and at helping parents cope. It issues newsletters, and organizes different kinds of meetings: regular family gatherings in every area, family courses once a year, warm water therapies, trips, etc.
For 2002, the association has two main projects. First, they intend to make contacts with the secretary of education to ensure that children who are out of school for long periods get education facilities. Second, they mean to make the access to university hospitals easier in order for diagnosis and free treatments not to be delayed.
They would be very much interested in creating a European parents’ group.
Presentation of Eurordis (European Organization for Rare Disorders) by Christelle Nourissier
25 million people in Europe are affected by rare disorders. Being represented by one organization, they carry a lot of weight on the European level, and, since the creation of Eurordis in 1997, the European commission has grown conscious of this fact.
190 associations from 14 European countries are grouped within Eurordis. As these many different associations are all concerned with rare diseases, they all experience similar difficulty in getting diagnosis, information, and drugs. Hence, the organization is dedicated to improving the quality of life of all people suffering from rare disorders. It also aims at helping associations create European networks by providing methodological guides.
The main missions of Eurordis are to draw attention to rare diseases on the European level, to advocate for information availability, and to promote research and access to new therapies. Actions are carried out by lobbying the European commission and laboratories, and by putting through programmes in favour of rare disorders. For instance, Eurordis followed up the implementation of the European regulations regarding orphan drugs, and sent incentives to labs to develop these drugs. The action was successful, even much more than expected with labs starting to fund associations as they found out that the market for orphan drugs is quite important.
For the past four years, Eurordis has developed several programmes using the following method: first, they draft the project; second, each representative makes studies on the subject in their own countries; third, they meet to deal with the information gathered; fourth, they produce a plan of action; fifth, they issue guidelines.
The first programme, called PARD1, about orphan drugs, has already been carried out. PARD2, which has been accepted but hasn’t started yet, will develop a patients’ network on the net, i.e. all sites of all associations will be gathered, which will make it easier for patients to get information. PARD3, which hasn’t been accepted yet, means to encourage meetings between associations and transfers of know-how and information about successful therapies. The project which is being worked on at the moment is called Eurobiobank and intends to organize a European network of DNA and tissues banks, so that information about both the material and the technology used could be shared.
The working day ended with a discussion on the points that the associations have in common and that would be more efficiently dealt with in a European organization. A wide range of ideas were put forward, such as developing a common education programme, sharing information about successful projects, setting up a European juvenile arthritis day for both awareness raising and fund raising, drawing more attention at international conferences, etc.
President Lascar closed the working session by encouraging everyone to think over this project of a European organization until the forthcoming congress in Stockholm where the associations would meet again and possibly take the last steps to launch such an organization.
