The Finnish Hemophilia Society (SHY) is a non-profit patient organisation for people with
haemophilia A or B, von Willebrand disease and other rare bleeding disorders. We are active
all over Finland and our organisation has about 600 members. Our members include people
with bleeding disorders, their families and healthcare professionals.
Become a member here.
Our goal
The main goal of our activities is to offer peer support and to raise awareness about
bleeding disorders.
Our goals are to:
● Promote the overall well-being of people with type A and B haemophilia, von
Willebrand disease and other rare bleeding disorders, as well as disease carriers and
their families.
● Offer peer support, support in daily activities and disease information to people with
bleeding disorders and their families.
● Promote good treatment of rare bleeding disorders in Finland and contribute to
unifying the treatment paths of these diseases and implementation of equal
treatment throughout Finland.
● Raise awareness about bleeding disorders and act as an advocate for people with
bleeding disorders and their families.
Read more about the organisation’s activities.
Organisation
Our operation is managed by a board elected in the annual meeting. The board includes a
chairman elected for three years at a time and 5–7 members elected for two years at a time.
The board elects a vice-chairman from among its members annually. The annual meeting is
held yearly in April-May. Our office is located in Helsinki.
SHY is a member of the European Haemophilia Consortium (EHC) and the World Federation
of Hemophilia (WFH).
History of SHY
The Finnish Hemophilia Society was founded in 1969 by doctors responsible for treating
haemophilia. The goal was to provide information about better treatment options and to
get people with bleeding disorders to participate in decision-making related to their
condition. Over the years, together with the Blood Service and pioneering doctors,
members have developed the organisation and worked actively in benefit of people with
bleeding disorders by providing information, education and peer support.
Have a look at the Tiiviste-magazine 50th anniversary issue, where you can find more
information about the history of the organisation and the treatment of bleeding disorders.