Held in the Radison SAS hotel in Reykjavik 25th - 27th of August 2006
Friday 25th of August
Eyjolfur Larusson the Chairman of the Icelandic Haemophilia Association kicked of the conference and welcomed the guests.
Dinner served at the seafood restaurant Tveir Fiskar in Reykjavik.
Saturday 26th of August
The conference started at 9 a.m.
Agenda for the day:
- Last year's activities of the various Nordic Haemophilia Associations
- Danish research - Haemophiliacs and the Social Service
- Treatments of Icelandic haemophiliacs
- Treatments of senior haemophiliacs
- Introductions from the pharmaceutical companies Baxter, Bayer and Behring
1 Last year's activities of the various Nordic Haemophilia Associations
- Focus on how the service to HIV positive haemophiliacs can be improved.
- Insurance topics - the insurance companies have promised to offer better services
- Family project - support for Haemophilic families
- Associates trained to work for the association
- Senior (40+) Haemophiliacs went on a trip to Canary islands
- Summer camps
- Meetings for associates were doctors have delivered presentations on haemophilia
- Summer camps
- Focus on preventive treatments
- Summer camps
- Senior haemophiliacs went on a trip to Tenerife
- The Haemophilia Centre was closed down. The service which was provided by the Centre is now covered by the Haemophilia Department which operates within the Department for Blood Deceases.
- Cost of factor - price of pharmaceuticals closely monitored.
- Haemophiliacs and HIV
- Summer camps
- Field trip - fathers and sons went on a field trip where the focus was on survival in the nature.
- Senior haemophiliacs met twice over the year.
- Support provided to Indian Haemophilia organisation.
- Letter sent to all haemophiliacs that were not members of the Haemophilia Association. This increased number of members by 10%.
- Meeting for young haemophiliacs
- Update of the Association's home page
- Two members of the management board (Eyjolfur and Sveinn) went to Brussels to participate in a European Haemophilia Conference.
- Yong haemophiliac went to a summer camp in Ireland.
- The government thought about having a tender offer for the factor product bought in Iceland but it was stopped by Pall Torfi.
- Gudrun Bragadottir went to the WFH Conference
- Preparation for the Nordic Haemophilia Conference
2 Danish research - Haemophiliacs and the Social Service
The Danish associates presented research that covered people with rare diseases. The aim of the research was to focus on support services provided to these groups of people. The results for Haemophiliacs were as follows: Haemophiliacs didn't need as much support as other groups. They were generally more satisfied with the service provide for them. The reason for this result could be that Haemophilia is men's disease and men talk less about their diseases than women do - they keep it to them self's. Haemophiliacs are very much aware of the disease. General knowledge about the disease is widespread.
3 Treatments of Icelandic haemophiliacs
Pall Torfi delivered a presentation about the status of Icelandic Haemophiliacs, their treatments etc
4 Treatments of senior haemophiliacs
Senior haemophiliacs do experience joint problems. This problem should hopefully not affect the younger generation.
The treatments are getting more expensive as the live expectancies of haemophiliacs increases which lead to more use of the factor.
When haemophiliacs experience age related diseases haemophilia issues can follow. This is why it is very important to keep close eye on this group of people. Physiotherapy should be offered to haemophiliacs free of charge.
Level of service for haemophiliacs depends on the county.
Many senior haemophiliacs are suffering and some are dealing with mental health problems. Trip to the Canary Islands was very successful.
The situation for senior haemophiliacs in Finland has improved and they are getting more support than before. They meet once a year and get education and consultancy from doctors and other specially trained people.
Senior haemophiliacs are getting greater attention than before.
There are very few senior haemophiliacs in Iceland and they are well connected to the Haemophilia Centre.
5 Introductions from the pharmaceutical companies Baxter, Bayer and Behring
Three pharmaceutical companies (Baxter, Bayer and Behring) delivered a presentation. All companies introduced new factor which will last longer ... than factors currently used. This new factor will only need to be given once per week. This new factor will be put on the market in few years time.
Genetic Medicine was not discussed.
Sightseeing - Reykjanes
Dinner was served the restaurant Grillid
Sunday 27th of August
- Nordic summer camps for haemophiliacs
- Sport - should haemophiliacs play sport as other people do?
- The European Association - should the Nordic Associations participate?
1. Summer camps
The group that was working on ideas for summer camps did not finish their project and therefore this subject could not be covered.
2. Sport - Should young haemophiliacs play sport as other people do?
Haemophiliacs should be able to practice most sport but they need to be aware of problems that can occur as a result of that practice.
The Norwegian Association agreed with the Danish Association.
The answer can be yes and no. It is important to practice sport but also important for haemophiliacs to know their own body. Practicing sport to build up and strengthen muscle mass and joints and to be treated by ... can be considered as preventive treatment.
The Swedish Association agreed with haemophilic practicing sport but pointed out that special attention had to be given to kids. What is not allowed gets more exiting. Bleeding to the joints early in live can become bigger problem later in live. In few years time it will be known how preventive treatments from early age affects haemophiliacs.
If treatments become more expensive it can affect senior haemophiliacs.
Young Icelandic haemophiliacs are practicing sport to some degree. Most associates are in favour of haemophiliacs practicing most sport. Doctors encourage haemophiliacs to practice sport but do not encourage contact sport. Young haemophiliacs do need to know their own limits.
3. The European Association
The work of the European Association was discussed and some members expressed dissatisfaction and suggested that the Nordic countries should break from the European Association. It was suggested that new chairman was needed for the European Association as the current chairman had not be able to cover certain matters. It was also suggested to send somebody to Sofia to run against the current chairman. It was decided to send a letter to the European Association in the name of the Nordic Associations to express this dissatisfaction and to demand change.
The Conference finished at noon.