Minutes of the General Meeting 27 November 2015, Stockholm, Sweden
Present members: Pall Onundarson, Margareta Holmström, Riitta Lassila, Lone Hvitfeldt Poulsen, Michael Damgaard, Maria Magnusson, Susanna Ranta, Eva Zetterberg, Pia Petrini, Fariba Baghaei
1. Appointment of chairman of the meeting:
Pàll was appointed as chairman and Fariba as secretary for the meeting.
2. The report from the past year by the Executive Committee (EXC):
New web-site is supposed to be accessible in few days. Webmaster is Pall. Send contents to Pall for publication online. Notify Pall about changes from your centers.
See attached annual report provided by EXC (NHC work in 2014-2015).
3. The report from the working groups:
a. FVII-deficiency- The group started the work in June 2015 with 9 different members representing all Nordic Countries with Eva Zetterberg as the chairperson. Some progress has been made. The group is planning to present the final document at the next NHC-meeting in conjunction with the Nordic Coagulation Meeting in Oslo.
b. Update on the acquired hemophilia guidelines –New working group with Jan Astermark and Fariba Baghaei will work on it during 2016.
c. VWD-guidelines – needs to be revised before the end of year 2017. EC will decide on which members will be included in the new working group at the next General Meeting (at least one member from each HTC). The current version of the VWD guidelines were published in the Seminars on Thrombosis and Haemostasis 2011;37:495-502 and is also available on the website.
d. A WG on a “Common database for the Nordic Hemophilia Centers”. Margareta Holmström and Elina Armstrong have been in touch. Andrea Landorph is replaced by Lone in this WG. Erik Berntorp remains as a member in this WG. The aim is to obtain annually updated vital statistics on bleeding disorders in the Nordic Area by surveying the centers or by online methods. The work has though been pending due to the work and launching of the Swedish Hemophilia Registry. The WG is now planning to restart the work. Margareta will inform about the Swedish Hemophilia Registry in the next NHC meeting in June in Oslo.
e. Working group on the principle of care and education was dissolved. f. WG on guidelines for diagnosis and treatment of platelet dysfunction was formed in 2013. Riitta remains as chairperson. The other members are Pål A. Holme, Andreas Hillarp, Eva Zetterberg. Maria Magnusson was elected as a new member. Suggestion for other members: Roza Chiareti and Jovan Antovic (Karolinska, Stockholm).
4. Presentation of the audited annual report from the past financial year:
Riitta has audited annual report from the past financial year.
Lone presented the data. Deposits by 16th of Nov 2015 was 92.911,78 DKK. More fundings are needed.
Plan for 2015-2016 : Suggestion: at least 5000 Euro /year/ pharmaceutical company. ExC will send sponsorship letters.
5. Discussion of incoming proposals:
- Membership for Hemophilia doctors from Baltic Countries? Pros and cons were discussed; for example a need for the change of the constitution and principals of NHC as well as cost issues in case of inclusion. More discussion at the next GM will be needed. A suggestion: Associated members? NHC and its members are keen to have a constructive collaboration and interaction with colleagues from the Baltic countries. A scientific meeting is planned to be held in Helsinki in June 2016 and Baltic countries will be invited according to Riitta.
- New members: Signy Vala Sveinsdottir and Brynjar Vidarsson from Reykjavik. Jovan Antovic, Roza Chairtei, Maria Magnusson from Stockholm. Maria Tornemo (Coagulation laboratory, Gothenburg).
6. Appointment of Executive Committee:
New chair: Fariba Baghaei (Gothenburg)
New Secretary: Elina Armstrong (Helsinki)
7. Appointment of working groups:
See above (3).
8. Appointment of auditor:
9. Any other business:
EXC suggests: Next general meeting to be decided by the EXC, preferably in association with a well attended scientific meeting or Nordic Hemophilia Days.