The Swiss Hemophilia Society

The Swiss Hemophilia Society (SHG) was founded in 1965. It is a self-help organization that supports haemophiliacs and people with other congenital coagulation disorders and their relatives. It is supported professionally by the Swiss Haemophilia Network SHN which is made up of treating physicians from the haemophilia centers. The SHG represents the interests of those affected in public as well as vis-à-vis payers and drug manufacturers.

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

As a member of the World Federation of Hemophilia, the SHG maintains contact with hemophilia societies abroad. It manages a solidarity fund for those affected in financial difficulties and provides information on insurance and legal matters.

 

Our activities

Journée Romande
This event takes place every two years in French-speaking Switzerland. One of the hemophilia centers in French-speaking Switzerland takes over the management of the event on a rotational basis. In addition to presentations on medical topics relating to haemophilia, participants also have the opportunity to make new contacts and talk to other affected people and doctors in person.

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

SHG summer camp
The SHG organizes a summer camp for children with haemophilia every year. This is an opportunity for young haemophiliacs to share their first experiences with others affected. It promotes independence and personal responsibility in the treatment of haemophilia, offers sporting activities within the scope of possibilities and relieves parents of the burden of caring for chronically ill children.

Autumn conference
Head: Experts from the children's and adult hemophilia centers of the SHN Region East.
The event starts in the morning with a joint brunch. The presentations focus on one or two current topics relating to haemophilia. Guest speakers are usually invited to give an insight into a therapy that supports conventional medicine, for example. The event creates opportunities to refresh old acquaintances and make new contacts with other sufferers.

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