Open Day 2000

by Lucinda Blauw, chair of IOYR

The first Open Day of the International Organisation of Youth with Rheumatism (IOYR) took place on Saturday 6 May in Copenhagen, Denmark. The invitation for this Open Day was addressed to the 14 member youth organisations and their mother organisations. Every youth organisation could appoint two young people with rheumatism and ask one member of their mother organisation to participate in the Open Day.

From left: Georg (Norway), Anders (Denmark), Lucinda
(The Netherlands), Dorte (Denmark) and Jacqueline (Switzerland)

The goal of the Open Day was to learn from each other about each other’s work for and as young people with rheumatism. This day had to be a kind of open discussion day, where everybody could get new ideas and inspiration to go back home with.

The mother organisations were invited because in some countries the communication between both organisations was not as they would like it to be, especially concerning the international work. Through this day the mother organisations were given the opportunity to learn about the international work and what it means for young people and can mean for themselves. They also would be able to talk with the other mother organisations about the youth work.

The participants of this day were
Vilma Bandzeviciûté (Lithuania), Georg Hodnefjell + Lars Espen Rath Vestad (Norway), Marianne Scobie (United Kingdom), Angel Moral Mate (Spain), Sara Hjalmarsson + Mattias Svensson (Sweden), Jacqueline Mäder (Switzerland), Lucinda Blauw + Juul van der Veen + Maarten de Wit (motherorganisation) (The Netherlands), Dorte Rønsler + Connie Andersen + Anders Madsen + Anne Lessél (mother-organisation) (Denmark).

 
Some of the happy  participants

Activities
During the day different participants told about activities for young people with rheumatism in their countries. Vilma told about the support group in Lithuania. The group comes together to talk about rheumatism, but also to do nice things together. To reach new young people with rheumatism they are in contact with the doctors.

Marianne told about the Positive Future Workshop for teenagers aged 11-17, organised by the English youth group. The goal of this workshop for the children is to gain more self-confidence and become more assertive. The workshops are highly appreciated by the children as well as their parents. It’s easy to find sponsorship for this kind of activity, the problem is to reach the children who can attend it.

Organisation-work
Mattias explained the structure of the Swedish youth organisation, which is completely independent from the mother organisation. They organise lots of different activities, such as summer and wintercamps (skiing for everybody).

Jacqueline told about the Swiss youth group and the partnership they have with the German youth organisation. Because they speak the same language the Swiss and the German youth group have been able to join each other in their meetings a few times.

Georg and Lars told about the co-operation with the mother organisation as an independent youth organisation. The difficulty is that they are not fully independent, they need their mother organisation for financial support and for staff members and office facilities. One of the good things is that the youth organisation can offer their members more. And the mother organisation assists the volunteers in the youth organisation.

Connie told about the magazine of the Danish youth organisation, which is published six times a year. They use the magazine to inform their members about local and national activities, and the members can exchange experiences and tell about how it is to be young and have rheumatism.

Juul told about a small research project from the Dutch youth group, in which needs and problems of youth with rheumatism were investigated.

The main conclusion was the young people with rheumatism do have a need for contact with other young people with rheumatism, but they also think that that is scary and confronting. And they don’t have a clear picture of the activities of the Dutch organisation. One thing that has come out of it is that the Dutch youth group is working on a ‘starters information package’ for young people that are just diagnosed with rheumatism.

Bone & Joint Decade
Maarten told about the Bone and Joint Decade and how youth organisations can participate. This decade is a world-wide, long term initiative to work together internationally with a national focus, in projects concerning joint diseases, low back pain, osteoporosis and trauma to the extremities. There will be given special attention to ‘crippling’ diseases in children and youth.

Read more about the Bone and Joint Decade at www.bonejointdecade.org.

Discussions
In the second part of the afternoon the group was split in two and both groups discussed about the future of IOYR. What will happen on a national and an international level? What can we as members do in and for IOYR? What can IOYR do and what can we expect from IOYR?

One of the main things that came out of this discussion was that the members need more information from IOYR. They need to know what is going on. This is also true the other way. The board of IOYR needs information from the members to write about in the newsletter.

One of the biggest goals of IOYR is to set focus on the fact that young people with rheumatism exist. The other goals could use some explaining and more discussion, something for the next international youth conference.

There was also a social programme included. On Saturday evening the Danish mother-organisation gave us tickets for the amusement park Tivoli. And for those who were still present on Sunday there was a sight seeing tour through Copenhagen, partly in a boat.