In English

Introduction

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

Estonian Haemophilia Society is a non-covermental organization founded on the 7th of November in 1992 with the main goal to improve quality of life of patients with haemophilia.

At that time the main goal was to achieve adequate treatment for all patients with haemophilia in Estonia. In 1994 the purified FVIII concentrates become available first time in Estonia. Since that, the annual usage of FVIII concentrates has increased reaching the steady state at 1 IU/ per capita in 1998. Patients have been treated with FVIII concentrate produced according to fractionation contract from plasma collected in Estonia. Nowadays coagulation factor concentrates are bought by Estonian Central Health Fund to cover 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.

Contacts

Eesti Hemofiiliaühing
Estonian Haemophilia Society
P.K. 118, Tartu 50002, Estonia
Mobile phone: +372 5021717
E-mail: ehy@hemofiilia.ee

Members

Patients with haemophilia A, haemophilia B, von Willebrand’s disease or with congenital deficiency of other coagulation factor are active members. Their family members can also apply for membership.
According to the data in 2008, society has 40 members.
The board of Estonian Haemophilia Society consists of three persons.

Member organization

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 disease, 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 disease and haemophilia patients.
» To help each-other by teaching how to manage with disease and everyday’s life

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