The first global GIST Awareness Day was observed on 13 July 2014 by the US-based Life Raft Group.
The Life Raft Group (LRG) which started in 2000 when a few patients started sharing their experiences – is focused on finding a cure for GIST – and to help those living with it until then. Three key areas – research, patient support & education, and advocacy – form the bedrock of its mission “to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment”.
In stressing the importance of sharing stories and experiences of patients, LRG has a kindred spirit in India-based Friends of Max and The Max Foundation whose own dictum “Together We Share And Learn” perfectly compliment LRG’s
In India, Friends of Max plays a vital role in the lives of GIST patients by not only stressing compliance but distributing physician-endorsed FAQ information, nutrition guidelines as well as organising Patient Group Meetings in several towns and cities enabling easy access/interaction between physicians and patients. Such meetings have established bonds between patients and Friends of Max that have lasted a lifetime. In addition, such Meetings provide an informal free-flowing environment for patients and caregivers to discuss various aspects of better disease management.
In celebrating another GIST Awareness Day we strengthen bonds that have been forged worldwide by a community of physicians, patients and caregivers who are determined to find a cure for a truly rare cancer.
