The goal of the Finnish Hemophilia Society’s activities is to support people with bleeding disorders and their families in different stages of life and to promote the implementation of equal treatment in Finland.
- We offer peer support to people with bleeding disorders and their families and also organise events, information and education for our members.
- We share information about bleeding disorders and their treatment, especially to our members but also to everyone interested, such as healthcare professionals and students.
- We actively follow progress on medication and treatments being made worldwide. We have cooperation with haemophilia organisations in other countries and attend international meetings and congresses focused on bleeding disorders.
- We cooperate with treatment centres specialising in bleeding disorders as well as with authorities to improve treatment of people with bleeding disorders, unify treatment practices and ensure access to treatment in the whole country.
- We strive to increase awareness and understanding of bleeding disorders and their treatment and to influence public decision-making to benefit people with bleeding disorders.
SHY publishes a membership magazine called Tiiviste, which is released three times a year. An extensive Verenvuototaudit (Bleeding disorders) info package has been updated and published as an e-book. You can find the materials we have published under the section Esitteet ja julkaisut (Brochures and publications) in Finnish.
Our organisation is a member of the World Federation of Haemophilia (WFH) and the European Hemophilia Consortium (EHC). On top of this, we are in close cooperation with corresponding organisations in the Nordics.
Yearly events and courses
Current information on future events can be found here.
At the Peer Support Weekend event organised in April, we gather to meet each other in a location that changes every year. The event is open to all our members regardless of age and background. During the weekend we offer different sorts of programs to different member groups around lectures, peer support and an annual meeting. The goal of the event is to offer concrete information about bleeding disorders in different stages of life to people with bleeding disorders and their families.
The traditional Children and Youth Camp, for young people aged about 7–18 years, is organised in June at the Pajulahti training center, Nastola. The purpose of the camp is to bring together young people with bleeding disorders, and their siblings, to spend time together, receive peer support, make new friends and get incentives for various activities. The camp makes it possible for young people to increase their know-how for improving the quality of everyday life through meeting others of the same age.
The goal of the Summer Camp in July is to receive peer support, network and to share information. The event is open to all our members, and the Tanhuvaara Sport resort in Savonlinna offers a nice location for meaningful movement and acting together. Another goal of the event is to increase well-being, improve coping with everyday life and transfer knowledge between experts by experience of different ages.
The Annual Event for Adults is organised in the autumn, and it is aimed at all our members: people with bleeding disorders, disease carriers and their families are all welcome. In the event, we focus on various themes related to everyday life, share experiences and learn from each other.
Family Weekend allows families of children with bleeding disorders to meet each other. During a weekend in November, there are expert lectures, discussion on subjects that families feel are important, injection guidance and it is generally just a nice time together. The family weekend is aimed at giving families with children a chance to receive information, peer support and spend time together.
About every other year, we organise a rehabilitation and adaptation training course for the adult members of the organisation who have a bleeding disorder.
Friendship Family activities
The goal of Friendship Family support group activities is to enable members to connect with another person or family in the same situation. Through these activities members can share experiences and get peer support in matters related to the disease.
A joining member can, if she/he wishes, enter her/his name on the Friendship Family list, which allows passing her/his contact information to other members of the organisation involved in the Friendship Family activities. You can also join later or resign from Friendship Family activities by informing the organisation. Contact information will not be given to anyone else but members involved in the activities. You can get more information from the office of the organisation.