Board Meetings

The Annual report of the NHC 2013-2014

06.09.2014
test abstract.Annual Report of the Nordic Hemophilia Council Executive Committee 2013-2014

There are currently 32 members of the council, ie most specialists working in the field in the Nordic area.

Members of the executive committee can hold a position for 3 consecutive 2-year terms. The executive committee (EXC) in 2013-2014 was:
• Pall T. Onundarson (Reykjavik) elected chairman 2009-2011, 2011-2013, 2013-2015
• Pål Andre Holme (Oslo) elected as secretary 2009-2011 and 2011-2013, 2013-2015.
• Lone Hvitfeldt (Århus) elected treasurer 2013-2015.

Currently there is no annual fee (deferred by voting at the annual meeting in 2012 as the NHC has been fortunate to receive adequate funds in the form of unconditional grants from the Industry).

Our current assets currently are about 165,000 DKR (23,000 EUR). We have on an ad hoc basis asked for and received sponsorship grants of 5,000 Euros from each of the following companies.
• 2009: Octapharma, Biovitrum
• 2010: Baxter, Bayer
• 2011: SOBI, Octapharma, Novo Nordisk, CSL Behring
• 2012 Bayer
• 2013 (none and none requested)
• 2014 (non requested yet)

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: 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 was estimated up to 25,000 euros. In reality it has been considerabely lower since some NHC activities have been arranged during industry sponsored meetings.

Working groups (WG)/guidelines

• COMPLETED 2009: Acquired hemophilia guidelines. A revision by Jan Astermark is underway as decided in 2011. This should be concluded in 2014.
• COMPLETED 2012: Von Willebrand disease guidelines, see nordhemophilia.org and abbreviated revised version in Seminars on Thrombosis and Haemostasis 2011; 37: 495-502. Currently no revision has been planned and there is no current WG.

• TO BE COMPLETED/PUBLISHED 2014: Hemophilia diagnosis and treatment guidelines: Erik Berntorp is the chairman, Riitta Lassila (Finland), Lone (Denmark), Pål Andrè (Norway), Páll (Iceland), Andreas Hillarp (Sweden). Jan Astermark participates in the committee as chair of the WG on principle of care and education. This group completed it´s work in 2012. The guidelines are being prepared for publication as a supplement in Hemophilia at the cost of the NHC.

• ONGOING (2010): ”WG on a common database for the Nordic Hemophilia Centers“ 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. Technical problems and ethical issues must be solved if the database will be online.

• ONGOING (2010): A working group on the principle of care and education was established in 2010 with Jan Astermark as chair (and only member). This WG which works in close connection with the group for Nordic guidelines for treatment of haemophilia. The aim is to write a high standard Principal of Care document and Curriculum for the Nordic countries.

• ONGOING (2013): WG on guidelines for diagnosis and treatment of platelet dysfunction. Riitta Lassila chairs this WG with Andreas Hillarp, Eva Zetterberg, Thomas Renne and Pål A. Holme.

Executive committee work in 2013-2014:

1. A revision of VWD guidelines is due in 2017. The EXC suggests that the NHC form a new WG no later than in 2015.

2. The EXC has received a proposal from members to found a working group on factor VII deficiency. The EXC decided to bring this up at the general meeting for discussion and suggests that this be endorsed if the financial situation allows. Guidelines to be finalized in 2015-2016. The cost of this new group in the coming year would be about 40.000 DKR (5 members, two trips each).

3. Website problem (http://www.nordhemophila.org, http://www.nordichaemophiliacouncil.org). The NHC runs a website which includes a closed site for members only (for meeting notes, bylaws etc). The open website is to emphasize:

- 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) members of the NHC should contact Sigridur Þyri Skuladottir (siggask@landspitali.is). If members would like something to be published on the web they should contact the webmaster (PTÖ) or the EXC.

We need to renew the website. The website has been dysfunctional lately as the software company, DesignEuropa, no longer exists. Therefore, there has been no updating of the software and we have had problems updating text and placing new text on the site. The website has been very cheap but we now need a new host and a renovation of the site.

We have received a new website offer from Advania (http://www.advania.com). Advania is an IT company, that “offers diverse services and solutions for software, consulting, hardware, IT operations, hosting and data center services.”

Estimated price for a new website using LiSA software (This website software is being used by Landspitali in Reykjavik).

Two possibilities, A and B:

A. A simple design, using an existing template. Website will be similar to the present website, including private space for NHC members (board meetings).
Total price: ca EUR 4.000

B. A more complicated, customized website.
Total price ca EUR 11.000

Both prices include a software discount of EUR 6.490 due to the business Advania is doing with Landspitali.

Monthly costs are:
- Monthly updating – obligatory EUR 100
- Monthly service costs – optional EUR 120
- Domain hosting at Advania – optional EUR 55

These prices do not include the cost of transferring text/pictures from the old website to the new one. We estimate that the cost of renovating the website in the coming year could be as much as 50,000 DKR and about 12,000 thereafter. This offer comes at considerably more cost than previously as well as an annual fee, i.e. about 37,600 DKR as well as an annual cost of about 12,000 DKR to keep the site and domains up.

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