Minutes from the Nordic Haemophilia Council general meeting, Visby, September 12th 2014
Participants: Páll Torfi Önundarson, Pål Andrè Holme, Eva Zetterberg, Anna- Elina Armstrong, Lone Hvitfelt Poulsen, Andreas Hilarp, Fariba Baghaei ,Vladimir Radulovic and Anne Mäkipernaa
1. Páll was appointed as chairman of the meeting.
2. Páll summarized the annual report of the Nordic Haemophilia Council (NHC) 2013-2014.
Current members: 31
Anna-Elina Armstrong (FIN) Anna-Elina.Armstrong@hus.fi
Jan Astermark (SE) email@example.com
Fariba Baghaei (SE) firstname.lastname@example.org
Erik Berntorp (SE) Erik.Berntorp@med.lu.se
Michael Damsgaard (SE)
Jörn Dalskov Nielsen JOEDA@rh.regionh.dk
Jens Peter Götze (DK) email@example.com
Pål Andre Holme (NO) firstname.lastname@example.org
Margareta Holmstöm (SE) email@example.com
Jenny Klintman (SE)
Riitta Lassila (FIN) Riitta.Lassila@hus.fi
Rolf Ljung (SE) Rolf.Ljung@med.lu.se
Anne Mäkipernaa (FIN) Anne.Makipernaa@hus.fi
Anna Olsson (SE)
Pall T. Onundarson (ISL) firstname.lastname@example.org
Pia Petrini (SE) email@example.com
Lone Hvitfeldt Poulsen (DK) Hvitfeldt@ki.au.dk
(New members elected 2013):
Ole Halfdan Larsen (DK)
Hoa Tran (NO)
Eva Zetterberg (SE)
3. Update on the different working groups:
Common database for the Nordic Hemophilia Centers (Margareta Holmstrom (Chair) Elena Armstrong, Erik Berntorp and Lone Hvitfelt Poulsen (new and replaced Andrea). The project are ongoing and Margareta will report the progress progression
Guidelines for diagnosis and treatment of platelet dysfunction: Riitta Lassila (Chair), Andreas Hillarp, Eva Zetterberg, Thomas Renne, Pål A Holme and Fariba Baghaei) Riitta will initiate the work and also include TEG, TGA -including aspects as PPP/PRP.
Acquired hemophilia: Jan will revise the current guidelines.
The Nordic Haemophilia Council Practical Guidelines for Haemophilia.
The guidelines are ready to be published.
Páll presented the audited annual report from the past financial year. (See attached Financial report).
All attendees accepted the report.
5. Incoming proposals
A proposal of a of a new working group on FVII deficiency was discussed and it was decided to establish such a group.
Eva Zetterberg will initiate the work and the group consist of the additional members: Pål, Hoa, Ole Halfdan, and Aino
6. New website
The old NHC website is dysfunctional and a new one must be established. Pall informed about new companies and prices (Advania, Island) and that they could replace the old site. It was also decided that other companies should be asked in other countries.
Everyone is responsible for correct information on the website.
7. Executive committee :
Páll is chairman for the period of 2013-2015
Pål is secretary for the period of 2013-2015
Lone is treasurer for the period of 2013-2015
8. Changes made in the NHC resolution:
It was decided that:
- The NHC will finance NHC initiated activities ie, attendance of members at the general meetings and working group activities
- All finance support, however, should be cleared by the executive committee 4 weeks prior to such meetings.
- All working groups should complete their work within 2 years
9. Next general meeting: NordCoag, Island august 2014
Pål Andrè Holme