Board Meetings

Minutes from the NHC general meeting in Helsinki August 2010

Minutes from the Nordic Haemophilia Council meeting,
Hilton Hotel Kalastajatorppa, room Katarina, Helsinki, August 26th 2010

Participants: Páll Torfi Önundarson (Reykjavik), Jan Astermark (Malmö), Pål Andrè Holme (Oslo), Andreas Hillarp (Malmö), Erik Berntorp (Malmö), Margareta Holmstrøm (Stockholm), Riitta Lassila (Helsinki), Anna-Elina Armstrong (Helsinki), Vladimir Radulovic (Göteborg), Kerstin Arbring (Stockholm).

1. Páll was appointed as chairman of the meeting.

2. Páll gave a presentation of the annual report of the Nordic Hemophilia Council (NHC) 2009-2010.
- the current NHC members
- Budget- review of issues in 2009-2010 (See attached Annual report).

The annual report is attached and posted separately on the website

Páll informed about the Website development which now has an open site and a closed site for the NHC members.
The open site has information about:
-Specific information regarding bleeding disorders relevant to the Nordic countries.
-Links to other centres. etc
-NHC member list

It was decided to offer an annual payment of 1000 Euro to Páll`s secretary in Iceland for maintaining the website in year 2010. It was also decided that she should receive an identical payment for year 2009 for her work on developing the website. All paying members will receive a username and a password for the closed site.

Jan gave a presentation of the audited annual report from the past financial year. (See attached Financial report).
NHC has not yet received payment form NovoNordisk and CSL for 2010.
Riitta suggested that an application for grant should also be sent to other companies within the field (eg LFB/Sanguin)

5.Working groups:

von Willebrand working group:
Andreas reported from the von Willebrand working group currently working on the revised version of the Nordic von Willebrand Guidelines.
- it was decided that the revised guidelines should be sent as a manuscript for publication preferably in a journal listed in the index medicus (eg. Int J Laboratory Hematology, editor Steve Kitchen) and that the full version should not be published on the website until after the publication in a journal if this is possible.

Nordic guidelines for treatment of haemophilia.
Erik was elected as the chairman of this new group with a member from each country Riitta (Finland), Lone (Denmark), Pål Andrè (Norway ) and Páll (Iceland). It was decided that NHC should wait for the new Swedish guidelines before starting up this work to prevent duplication of the work.

Working group for principle of care and education
It was determined to establish a working group for principle of care and education. The group will be chaired by Jan and will work in close connection with the group for Nordic guidelines for treatment of haemophilia.

Working group for a common database in the Nordic centres.
The NHC wants to have a common database in the Nordic centres and different solutions were discussed. The aim is to get vital statistics form the Nordic Hemophilia Centers. Margareta will chair this work in the future with a member from each haemophilia treatment center.

Other business:

6. Nordic Consensus meetings.
The NHC aim is to have Nordic Consensus meetings within the objectives of NHC as a part of NHC activities in the future. Such meeting will then be held without any direct support or attendance from pharmaceutical companies. However, this will require increased annual support from the companies. Possibly such consensus meetings can be arranged in association with the annual NHC general meetings.

7. Liver transplantation in haemophilia in the Nordic countries:
As agreed at the Haemophilia Days, Oslo, 2008 a Nordic collaboration will take place. There is a Nordic registry on liver transplants and hopefully each Haemophilia treatment centre will participate. The process is chaired by PhD student Hoa Tran (Oslo).

8. Common ID –cards in the Nordic region was briefly discussed. No decision was made.

9. Advice to authorities: It was decided that the NHC could give advice to authorities.

10. Advice to pharmaceutical companies: The NHC should in general not give advice on specific issues from pharmaceutical companies unless a specific request has been discussed and passed at a general meeting.

11. Jan was re-elected as treasurer for a 2nd term of two years

12. Riitta was re-elected as auditor.

13. The council elected Jørgen Ingerslev of Århus, Lilian Tengborn og Malmö and Lennart Stigendal of Göteborg as honorary members of the NHC, since they have not retired from practice.

14. Next meeting: To be determined, likely in association with the next NordCoag meeting. However, it was discussed to arrange the annual NHC meeting as a 1.5 days meeting not in association to any other meeting since our tasks are plenty.

Oslo 26.08.10

Pål Andrè Holme
Secretary NHC

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