NHC Annual Report 2014-2015
NORDIC HEMOPHILIA COUNCIL GENERAL MEETING 2015
Stockholm, Sweden, November 27 2015
Annual Report of the Nordic Hemophilia Council Executive Committee
About the NHC.
Since January 27th 2009 the NHC is officially registered as a Danish association (CVR #31840422). The NHC has its registered office at the address of the Haemophilia Centre in Copenhagen: Enhed for Trombose og Hæmostase, Hæmatologisk Klinik IV, afsnit 4271, Rigshospitalet, Blegdamsvej 9, DK-2100 København Ø, Denmark. According to the NHC bylaws (see www.nordhemophilia.org closed website) the aims of the NHC are to:
- Improve knowledge on haemophilia and related disorders
- Further and support the cooperation between the Nordic haemophilia centres
- Further and support the theoretical and clinical education and research within haemophilia and related disorders
- Develop diagnostic and treatment guidelines
- Serve as an expert referral group for, and give advice to authorities, concerning matters within the area of haemophilia and related disorders
- Foster international collaboration
All specialists at Nordic hemophilia centers are eligible for membership in the NHC through application to the council and approval by vote at a general meeting.
There are currently 31 elected members of the council, these are most specialists working in the field in the Nordic area but all are not active in the field anymore.
Anna-Elina Armstrong (FIN) Anna-Elina.Armstrong@hus.fi
Anne Mäkipernaa (FIN) Anne.Makipernaa@hus.fi
Anna Olsson (SE)
Erik Berntorp (SE) Erik.Berntorp@med.lu.se Jan Astermark (SE) firstname.lastname@example.org
Eva Zetterberg (SE)
Fariba Baghaei (SE) email@example.com
Hoa Tran (NO)
Jenny Klintman (SE)
Jens Peter Götze (DK) firstname.lastname@example.org
Jörn Dalskov Nielsen JOEDA@rh.regionh.dk
Lone Hvitfeldt Poulsen (DK) Hvitfeldt@ki.au.dk
Margareta Holmstöm (SE) email@example.com
Michael Damsgaard (SE)
Ole Halfdan Larsen (DK)
Pall T. Onundarson (ISL) firstname.lastname@example.org
Pål Andre Holme (NO) email@example.com
Pia Petrini (SE) firstname.lastname@example.org
Riitta Lassila (FIN) Riitta.Lassila@hus.fi
Rolf Ljung (SE) Rolf.Ljung@med.lu.se
Executive committee (EXC) in 2014-2015 . Members of the executive committee can hold a position for 3 consecutive 2-year terms. They are currently:
- Pall T. Onundarson (Reykjavik) elected chairman 2009-2011, 2011-2013, 2013-2015; term over, not eligible for re-election as chairman.
- Pål Andre Holme (Oslo) elected as secretary 2009-2011 and 2011-2013, 2013-2015; term over, not eligible for re-election as secretary.
- Lone Hvitfeldt (Århus) elected treasurer 2013-2015, eligible for a second term.
Currently there is no annual fee (this was deferred by a vote at the annual meeting in 2012 as the NHC has been fortunate to receive adequate funds as unconditional grants from the industry).
Our current assets are about 160,000 DKR. We have asked on an “ad hoc” basis for and received sponsorship grants of 5,000 Euros each from the following companies, ie 10,000 Euros annually.
- 2009: Octapharma, Biovitrum
- 2010: Baxter, Bayer
- 2011: SOBI, Octapharma, Novo Nordisk, CSL Behring
- 2012 Bayer
- 2013 (none and none requested)
- 2014 (none)
- 2015: To be detailed by treasurer (Lone)
The EXC committee/treasurer decides on each formal request for cost reimbursement of it´s members. All requests must be made before each meeting.
Financial cost estimate at the first general meeting: The predicted maximum cost of the NHC each year is the annual general meeting, two annual executive committee meetings (chairman, secretary and treasurer) and meetings of working groups founded at general meetings. Many meetings can be arranged as single-day trips thus saving hotel cost. The running cost estimated at the foundation meeting in Oslo was based on the following calculations:
*Cost of annual general meetings (airline tickets, hotel 20 paying members = 20 trips)
Thus, the maximum estimated annual cost was up to 25,000 euros. In reality it has been considerabely lower since some NHC activities have been arranged during industry sponsored meetings and other projects have proceeded slower than we had hoped.
NHC work in 2014-2015:
- The website (www.nordhemophila.org, www.nordichaemophiliacouncil.org) has now been renewed and will open at the 2015 general meeting.As previously, the new website has an open site and a closed site for members only (for meeting notes, bylaws etc). According to our bylaws the open website emphasizes:
- Contact information of the Nordic hemophilia centers
- Specific information on bleeding disorders and referral sites relevant to the Nordic countries, ie vital statistics etc.
- NHC member list
- Proceedings of the NHC, e.g. guidelines
- Links to major educational sites.The NHC website is not designed to compete with those sites.
- Possibly a list of important Nordic publications in the field
In order to get access to the closed site (username, password) and for corrections etc members of the NHC should contact Sigridur Þyri Skuladottir (email@example.com).
If members would like something to be published on the web they should contact the webmaster (PTÖ; firstname.lastname@example.org) or members of the EXC.
The new webhost is Advania Ltd (www.advania.com).
- The NHC guidelines on Hemophilia diagnosis and treatment have been finalized and posted on the new website. The working group has subsequently been dissolved. The guidelines are being prepared by Erik Berntorp for publication as a supplement in Haemophilia with financial support offered by SOBI. We have discussed publishing the VWD guidelines in the same issue but this will probably not be done since the VWD guidelines from 2012 are now up for renewal in 2017, see below.
- A revision of VWD guidelines (see website and Seminars on Thrombosis and Haemostasis 2011; 37: 495-502) is due in 2017. The EXC suggests that the 2015 general meeting appoint a new WG to revise the guidelines before the end of year 2017. There should be at least one participant from each center.
- At the last general meeting it was decided to form a working group on factor VII deficiency and guidelines are to be finalized in 2016.The estimated cost of this new group in the coming year is about 40.000 DKR (5 members, two trips each).Eva Zetterberg chairs this group with other members being Ole Halfdan Larsen, Pål Andre Holme, Hoa Tran and Aino Lepantolo.
- ”WG on a common database for the Nordic Hemophilia Centers (2011-)“ was founded and in 2011 it was decided that Margareta Holmström (Chair) and Elena Armstrong (co- Chair) together with Erik Berntorp and Andrea Landorph should lead this work in the future. The aim is to obtain annually updated vital statistics on bleeding disorders in the Nordic Area by surveying the centers or by online methods.
- A working group on the principle of care and education was established in 2010 with Jan Astermark as chair (and only member). The aim is to write a high standard Principal of Care document and Curriculum for the Nordic countries.
- WG on guidelines for diagnosis and treatment of platelet dysfunction (2013). Riitta Lassila chairs this WG with Andreas Hillarp, Eva Zetterberg, Thomas Renne and Pål A. Holme.
- The current acquired hemophilia guidelines are since 2009 and a revision by Jan Astermark is underway.