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Living with a rare disease like Gaucher disease is not always easy, especially being a young person. The IGA believes that young patients, more than others have the need to share their thoughts about education, work, raising a family and psychological aspects, with other young patients.

 

Young adulthood is filled with challenges such as education choices, starting a career, becoming independent and raising a family. Living with Gaucher disease may present some other challenge like talking to friends and family, maybe an employee, about Gaucher disease or the psychological aspects of living with a lifelong rare disease.  If it does, it helps to have support from other young patients in reaching decisions and overcoming hurdles. 

 

This is why the IGA created the Go with Gaucher symposium - the IGA is convinced that the Go with Gaucher symposiums will help to improve the quality of life for the participants, broaden their horizons.

 

The symposium program covers academic lessons about Gaucher disease, educational workshops on themes like public relations and event planning, break-out sessions about being a Gaucher patients and other relevant and up-to-date subjects. 

GWG is a symposium for young Gaucher patients representing member associations of the IGA and its participation is by invitation only. 

If you are interested to learn more, please contact your national association.

Building capacity, strengthening and promoting leadership

 

The IGA and its member associations are almost always run by volunteers, such as parents of patients and patients themselves.  These people work on both a national basis and with the IGA and they have done and do a fantastic amount of work to support Gaucher patients wherever they are.

 

In the future the IGA and the national associations will need new people to take over and continue this work. Also as the IGA expand our footprint in the world of Gaucher disease we seek to involve more representatives from our member organizations in the work being done. 

 

Therefore, an important purpose of the symposium is to search for future leaders of the Gaucher associations and encourage them to take an active role in their national associations and at an international level. 

 

Go with Gaucher...

 

because you will always have Gaucher with you, wherever you are and whatever you do.  The main thing is to keep going!

 

Taking forward the next generation...

 

because we need to pass on knowledge to the next generation about Gaucher disease and the unique work done by the IGA and its member assocations.