Schweizerische Hämophilie-Gesellschaft

The Swiss Hemophilia Society

The Swiss Hemophilia Society (SHG) was founded in 1965. It is a self-help organization that supports people with hemophilia and other congenital coagulation disorders, as well as their families. It is supported by the Swiss Haemophilia Network (SHN), which is made up of doctors treating patients at hemophilia centers. The SHG represents the interests of those affected in public and vis-à-vis cost bearers and drug manufacturers.

Like many other Swiss patient organizations, the SHG is a member of AGILE, the umbrella organization for self-help for people with disabilities. Through AGILE.CH, the SHG also influences political processes and opinion-forming, e.g., when it comes to disability pensions or equality for people with disabilities.

As a member of the World Federation of Hemophilia, the SHG maintains contact with foreign hemophilia societies. It administers a solidarity fund for those affected by financial hardship and provides information on insurance and legal matters.

 

Our activities

Journée Romande
This event takes place every two years in western Switzerland. The event is organized on a rotating basis by one of the hemophilia centers in western Switzerland. In addition to lectures on medical topics related to hemophilia, participants also have the opportunity to make new contacts and seek personal conversations with other affected individuals and doctors.

Bern Conference
The annual Bern Conference focuses on families with hemophiliac children and their environment. Medical and psychosocial aspects are addressed to help participants cope better with everyday life. These include topics such as possible sports activities, siblings of hemophiliacs, correct dosage of preparations, etc. The event offers plenty of opportunity for questions and discussion among family members. Led by specialists from the Hemophilia Center at Inselspital Bern.

SHG summer camp
Every year, the SHG organizes a summer camp for children with hemophilia. This is an opportunity for young hemophiliacs to share their experiences with others in the same situation. It promotes independence and personal responsibility in the treatment of hemophilia, offers sporting activities within the scope of what is possible, and relieves parents of the burden of caring for chronically ill children.

Autumn conference
Led by: Experts from the pediatric and adult hemophilia centers of the SHN Region East.
The event starts in the morning with a communal brunch. The presentations focus on one or two current topics related to hemophilia. Guest speakers are usually invited to give insights into therapies that support conventional medicine, for example. The event provides opportunities to catch up with old acquaintances and make new contacts with other people affected by the condition.

Workshop
Every other year, the SHG organizes a two-day workshop weekend. The aim is to offer members the opportunity for extensive exchange in a pleasant atmosphere. However, specialist knowledge and entertainment are not neglected either.