Board Meetings

Minutes from the General Meeting 2 September 2017 in Helsinki

06.09.2017

Nordic Haemophilia Council General Meeting

Location: Finlandia Hall, Room 21.

Date: Saturday 2 September 2017: 13.30- 14.50

Elina Armstrong, Helsinki, Finland

Eva Zetterberg, Malmö, Sweden

Fariba  Baghaei, Göteborg, Sweden

Jan Astermark, Malmö, Sweden

Margareta Holmström, Stockholm, Sweden

Michael Damgaard, Göteborg, Sweden

Pall Önundarson, Reykjavik, Iceland

Pia Petrini, Stockholm, Sweden

Pål Andre Holme, Oslo, Norway

Rolf Ljung, Malmö, Sweden

Susanna Ranta, Malmö, Sweden

Riitta Lassila, Helsinki, Finland

Vuokko Nummi, Jyväskylä, Finland (vuokko.nummi@helsinki.fi)

New members:     Timea Szanto, Helsinki, Finland (timea.szanto@hus.fi)

                               Edward Laane,  Tallinn, Estonia

(edward.laane@regionaalhaigla.ee)

                Ines Vaide,  Tallinnn, Estonia

(ines.vaide@regionaalhaigla.ee)       

 

Meeting agenda

  1. Appointment of chairman for the meeting - Fariba
  2. Appointment of secretary for the meeting - Elina
  3. Report of the past year by the Executive Committee – will be distributed by email
  4. Appointment of the Executive Committee (from Nov 2015 - 2 year term, up to 3 consecutive times)
    1. Fariba and Elina will continue. Appointment of new treasurer – Executive committee suggests Eva Funding. Eva F was selected.
  5. Presentation of the audited Financial Report from the past financial year – Lone not present, has sent data and presentation. Will attach to the Annual Report to be completed by Fariba and Elina by the end of the year.
    1. Bank account balance: 177.087,70 d.kr
    2. Future payments: 8138,66 d.kr
    3. In total: 168.949,04 d.kr

      Discussion regarding only two companies supporting, SOBI and Octapharma. All companies were approached. Some companies cannot give unrestricted grants. Agreement from Shire, treasurer to follow-up. CSL Behring likely, also can ask Roche.

  6. Decision about including Estonian colleagues as affiliate members
    1. see attached document; NHC Article of Association, comment on item 6-7
    2. Amendment of the Articles of Association -document: Discussion regarding the definition of ‘affiliate member’: fully participating, non-voting members
    3. Items 6. and 7. were decided to be amended by all attending members in agreement with item 18 (General Meetings) of the Articles of Association. Fariba and Elina will  revise the wording accordingly and send to members.
    4. Aims of membership for the Estonia and other Baltic countries was discussed. Edward L explained benefits of membership, for example when discussing treatment resources with authorities
    5. It was decided to accept Edward L and Ines V from the Tallinn center , Estonia, as affiliate members to the Nordic Hemophilia Council
  7. Report of the working groups
    1. Nordic Hemophilia Guidelines
      1. Current situation; most drafts are final or almost final, some coordination among co-writers to be done
      2. Pall to send questionnaire again to non-responders
      3. Discussion regarding the review process. Drafts to be sent by email to co-authors internally for every chapter by the responsible author (see attached power-point ‘who does what’. Pre-final drafts to be sent to Fariba by 15 Oct, 2017. Will be circulated among working group members by Fariba before the next consensus meeting, to be held in conjunction with Nordic Hemophilia Days Thu morning (Nov 23, 2017) at the airport with one representative from each country.
    2. Platelet function assessment in the Nordic countries (Riitta and Eva Z)                   i. Riitta: electronic form now available, will be sent to all for responses            ii. Eva: announcement of the first meeting, 16-17 March 2018 in Malmö
  8. New members: Edward Laane (Tallinn, Estonia) edward.laane@regionaalhaigla.ee, Ines Vaide (Tallinn, Estonia) ines.vaide@regionaalhaigla.ee, Carola Henriksson (Oslo, Norway) carola.henriksson@medisin.uio.no , Timea Szanto (Helsinki, Finland) timea.szanto@hus.fi
    1. To update member list and contact emails. Each center to send to Fariba
  9. Discussion of incoming proposal
    1. Nordic study about acquired hemophilia – Eva Z
      1. Fariba will send proposal to all                                                                     
    2. Shire has expressed interest in a AHA registry, prelim discussed with Margareta H
  10. Other issues
    1. NHC website
      1. Pall has not received suggestions regarding content improvements or ideas and suggested News etc. to be posted  – for example, Estonia has joint as an affiliate member – Elina will send
      2. Please send requests, updates, quotes etc to Pall or to Sigga: siggask@lsh.is
      3. Meeting announcements, agendas, and minutes could be posted at the members-only section of the web-site (Fariba and Elina discussed after the meeting)
  11. Next meeting – is to be held in connection with NHD in Copenhagen 23 Nov 2017

 

 


Comments: 0