Pages are mostly in each group’s local language – but Google Translate should help you get a rough-and-ready English translation.
Vasculitis Association in Finland: SuomenVaskuliittiyhdistysry
This national organization was registered in November 2013 and all the founders were people who have vasculitis.
We have true members and supporting members. A person can be a true member only if he/she has vasculitis. Supporting member can be anyone, or any company, association or other organization. At the end of January 2016 we had 86 true and 12 supporting members. Finland´s population is 5,5 million. If there were 100 vasculitis in one million, there should be around 600 Finnish people here who have some type of vasculitis.
What do we do?
SuomenVaskuliittiyhdistys has website www.vaskuliittiyhdistys.fi and we are still building it up. All of the diagnosis descriptions have not yet been translated to Finnish. We are improving all the time.
Once a year we have a member meeting weekend. SuomenReumaliittory (The Finnish Rheumatism Association) has organized the meeting with us and helped financially with it.
We are a member organizationofSuomenReumaliitto ry. The Finnish Rheumatism Association organizes activities to patients who have different kinds of autoimmune diseases related to rheuma, like vasculitis patients. They have also a small team “Harvinaisia” (Rare Diseases). This is why we co-operate closely.
Vasculitis Stichting” – Your Dutch Vasculitis Family
The name of our organisation is ‘Vasculitis Stichting’, a name you should not even try to pronounce. The ch-sound in the middle of the word Stichting makes most British people think there is something seriously wrong with our throat. The meaning of the word is simply ‘foundation’. The organisation was founded in April 1989. Its initial name was Friedrich Wegener Stichting since it was completely focused on GPA or ‘Wegener’s disease’. To better reflect our current activities we renamed the organisation ‘Vasculitis Stichting’ as per January 2013.
At the beginning of 2016 we had just over 1.300 members with 1.200 of them being a patient. GPA with its 840 patients is still counting for the vast majority of them.
Organisation and Funding
The organisation has no paid staff and no office. It is run by 45 volunteers with a small board, working from home and renting space when needed. Members pay an annual fee of €25. On top of that we get an annual grant from the Ministry of Health of €35.000. The latter is a fixed amount available to all Dutch patient organisations with over 100 members each paying a contribution of at least €25 per annum. We have a medical advisory board of leading vasculitis experts and a good relationship with most hospitals and doctors treating vasculitis patients.
We publish a 36-40 pages’ magazine called Vascuzine every 4 months. It has a balanced content in the categories scientific, medical, medicine, personal, foundation and general. Even in this digital era the magazine still meets a serious need and it is highly appreciated by our members. Of course we have some brochures and other printed material as well and since no organisation can do without a website, you can find us on www.vasculitis.nl
Every odd year we organise a big event in the centre of the Netherlands (we are an extremely large country you know…) where 15-20 specialists run workshops on vasculitis related topics. They cover organs like heart, lungs, kidneys and skin but also topics like medication, research and things like fatigue, mindfulness etc. Last year we had 18 speakers and just over 500 people attending.
In the even years we organise 8-10 local meetings, each of them usually attended by 40-60 people. We then have one or two speakers who zoom in on a particular form of vasculitis.