In English

Introduction

The Estonian Haemophilia Society unites patients with haemophilia A, haemophilia B and von Willebrand’s disease, and their family members.

The Estonian Haemophilia Society is a non-governmental organization founded on the 7th of November 1992 to improve patients’ quality of life.

At that time the main goal was to achieve adequate treatment for all patients with haemophilia in Estonia. In 1994 purified FVIII concentrates became available for the first time in Estonia. Since then, the annual usage of FVIII concentrates has increased, reaching the steady-state of 1 IU per capita in 1998. Patients have been treated with FVIII concentrates produced according to the fractionation contract from plasma collected in Estonia. Nowadays coagulation factor concentrates are bought by the Estonian Central Health Fund to cover the needs of all patients. On-demand home-therapy is now available for all haemophilia patients. The laboratory facilities have improved remarkably allowing diagnosing the severity of haemophilia and different types of von Willebrand’s disease.

Members

Patients with haemophilia A, haemophilia B, von Willebrand’s disease or with congenital deficiency of other coagulation factors are active members. Their family members can also apply for membership.

The board of the Estonian Haemophilia Society consists of three people. In 2018 the society had 62 members in total.

Organizations

The Estonian Haemophilia Society is a member organisation of the Chamber for Disabled People in Estonia, the European Haemophilia Consortium, and the World Federation of Haemophilia.

Goals

  • To represent haemophilia patients and their interests.
  • To collect, publish and distribute information about haemophilia, treatment and coagulation factor preparations.
  • To improve the haemophilia treatment, care, and rehabilitation service in Estonia.
  • To improve the availability of safe and effective coagulation factor preparations in sufficient quantities and affordable prices.
  • To increase public awareness about haemophilia and haemophilia patients.
  • To help each-other learn to manage the disease within one’s everyday life.

To achieve these goals the haemophilia society organizes educational seminars, summer camps, publishes information booklets and provides information through the website.

Contact

Eesti Hemofiiliaühing
Estonian Haemophilia Society
Address: Lepiku tee 19, Õssu küla, Kambja vald, Tartumaa 61713
Phone: +372 5021717
Email: ehy@hemofiilia.ee