Board Meetings

Minutes from the NHC general meeting Stockholm August 2012

Participants: Páll Torfi Önundarson, Pål Andrè Holme, Erik Berntorp, Riitta Lassila, Fariba Baghei, Andreas Hillarp, Margareta Holmström.

1. Páll was appointed as chairman of the meeting.

2. Páll gave a presentation of the annual report of the Nordic Hemophilia Council (NHC) 2011-2012.
- the current NHC members
- Budget
- Update on the different working groups
- Issues in 2011-2012 (See attached Annual report).

Páll informed about the Websites. No new proposals for the website has arrived. However, the site is frequent visited, especially the guidelines.

Páll on behalf of Jan presented the audited annual report from the past financial year. (See attached Financial report)
The report was accepted by all attendees.
Membership fee: It was decided to further drop the annual fee for the members and instead apply membership through the website annually.

The NHC are concerned that not all countries were present at the annual general meeting this year and Páll will send out a note concerning this.

5.Working groups:

- von Willebrand working group: (Andreas (Chairman)
Andreas gave an update and went through the manuscript were discussed in plenum. The full version is nearly finished. The finished
version will be published within 1 month on the Web site.

- The Nordic Haemophilia Council Practical Guidelines for Haemophilia.
The work was inititated in May 2012 by Erik (chairman). The group are working on a first draft that was presented at the meeting . The
final guidelines will be finished within 2013 Q4.
The project has been split into:

Pall: (1500 words) Background about the disease and history in our area, diagnostics (Andreas).

Riitta: (2000 words) organisation (hemophilia center, briefly about our countries, WFH/NMOs/EAHAD/NHC), registries, health-economy,
QoL, rehabilitation, aging (separate chapter at very end) (Elina and Andrea)

Erik: (2000 words) concentrate treatment incl prophylaxis. Asessment (with Margareta) Pediatrics (involve Rolf Ljung and Pia and Niels

Jan: (1500 words) inhibitors (with Fariba), EAHAD (see above)

Pål: (1500 words) surgery (including inhibitors), )

Lone: (1500) Nurse function, education, self-care, WFH/NMOs (see above move), dentistry, pain treatment, HIV/hepatitis (very brief
including new agents, move up to concentrates), chronic disease aspects

NMOs given opportunity to give comments (when document prefinal)

The group will have the next meeting including a draft version within late November

- Acquired hemophilia: Jan will revise the current guidelines

- Platelet dysfunction (Ritta will chair the group) Members appointed: Andreas Hillarp , Fariba Baghei, Eva Zetterberg, Thomas Renne, and Pål A Holme.

- Working group for principle of care and education.
The group is 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 (Chair) and Elena (co- Chair) together with Erik and Andrea will lead this work.

Jan was re-elected as treasurer 2012-2014
Riitta was re-elected as auditor

8. Next meeting: To be determined.

Oslo 30.08.12

Pål Andrè Holme
Secretary NHC

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