- 25-04-2019April Newsletter
- 10-04-2019AVROBIO Explore Gene Therapy As a Potential Treatment For Gaucher Disease
- 26-03-2019March Newsletter
- 06-03-2019Election of New Chair and Vice-Chair
Maybe you feel like the only young person living with Gaucher disease and you would like to chat and meet with others in the same situation as you?
This is why the IGA created the Go with Gaucher symposium.
The IGA recognizes that it is not easy to live with a rare disease, especially when you are a young person. We believe that you, more than others have the need to share your 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, talking to your friends and family about Gaucher disease, talking to your employee about Gaucher disease. Having Gaucher disease may present some other challenge. If it does, it helps to have support all over the world in reaching decisions and overcoming hurdles.
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 we will need new people to take over and continue this work. Therefore, an important purpose of the seminar is that we will find future leaders of the Gaucher associations and encourage them to take an active role in their national associations and at a European/international level.