Spring navigationen over og gå direkte til indhold

About us

The Danish Haemophilia Society is a National Member Organization for people living with haemophilia and ITP in Denmark. 


The Danish Haemophilia Society was established in 1970. At the same time factor therapy was introduced in Denmark. The first important task of the Danish Haemophilia Society was to persuade the Danish authorities to establish haemophilia treatment centres and to locate and inform people living with haemophilia about the new opportunities that the therapy opened to them.

Over the years the Society has gradually become a politically strong organisation and is deeply involved in improving conditions for people with haemophilia, nationally as well as internationally.

Objectives

The objectives of the Danish Haemophilia Society are to:

  • Offer counselling, support and information to people with haemophilia and their families
  • Strengthen the contact between members through seminars, meetings, summer camps and other activities
  • Disseminate knowledge about haemophilia and the activities of the Society
  • Put focus on new ways of treatment through information and debate
  • Promote and support research in haemophilia through co-operation with the two Danish treatment centres
  • Participate in the public debate on issues regarding disabled people
  • Co-operate with other patients' organisations nationally as well as internationally

Member activities

Summer camp
The camp is a regular annual activity for children with haemophilia under the age of 18. The main objective of the camp is to teach the children to give themselves their injections but also to create a social network among them. Usually about 25 children participate in the camp.

Family seminars
The Society arranges an annually seminar for parents and their children. The seminar includes speeches on current issues, debate and exchange of experiences between the participants. 

Young people
Group of young members in the Danish Haemophilia Society arrange various activities, like going to a concert. Normally, the group arrange one or two activities per year but the frequency varies.

Elderly people
Once a year the elderly members from the Society and their wives/husbands have a chance to meet at special seminars. The group of elderly members are called 50+ and the activities for this group are called 50+ seminars. The seminars offer a good opportunity for exchanging experiences from a long life with haemophilia and talking about current challenges.

Women
Woman with bleeding disorders and carriers are often neglected groups in the haemophilia world. Therefore the Danish Haemophilia Society offers these women a chance to meet and exchange experiences every other year.

Hiv-days
The hiv-days are held once or twice per year. Participants are hiv-infected members and their families. The agenda usually holds the latest developments in medical treatment and psycho social themes.

Conference and general assembly
The general assembly is held in connection with a yearly member conference over a weekend. The conference includes plenary sessions and workshops about different issues related to haemophilia.

Funds

Two funds are administered by the Danish Haemophilia Society:

The Support and Research Fund – established in 1980 by the Danish Haemophilia Society. The fund supports people with haemophilia and research in haemophilia.

The HIV Compensation Fund – established by law in 1995 for a period of 15 years with a sum of DKK 20 million. The objective of the fund is to support HIV infected people with haemophilia and their dependants.

Statistics

The Danish Haemophilia Society has approximately 650 members. Most of these are haemophilia patients, parents of children with haemophilia and other relatives.

Approximately 1000 people in Denmark are diagnosed with a bleeding disorder:

Haemophilia A - 388
Haemophilia B - 93
Von Willebrand Disease - 391
Other bleeding disorders - 87

(Numbers from August 2011)

Network

National contacts 
The Danish Haemphilia Society cooperates with a number of Danish organisations in fields relevant to haemophilia and disabilities. Theese include:

  • DH - The Danish Council of Organisations of Disabled People
  • Rare Disorders Denmark - Alliance of 49 rare disease organisations

International contacts 
Among our international coorporation partners are:

 

Contact
The Danish Haemophilia Society

Kompagnistræde 22, 2. sal, baghuset
1208 Copenhagen K
Denmark
Telephone: +45 3314 5505
E-mail: dbf@bloderforeningen.dk

Office hours
Mon-Thu: 10am-2pm
Fri: Closed

Details about Haemophilia treatment centres in Denmark:

Haemophilia treatment centres

There are two haemophilia treatment centres in Denmark. Find contacts details here.

Board and secretariat

The board of the Danish Haemophilia Society consists of nine members and two alternates. Board members either have haemophilia or ITP or they are related to a person with haemophilia/ITP.