GIST knows no boundaries. According to a 2016 study, the epidemiology of GIST exhibits some consistent features across geographical regions. High and low incidence outliers are found across continents.1 GIST patients are out there, in need of support, advice and treatment.
Since our inception, the Life Raft Group has focused on several key pillars. One of those pillars is “to increase access to effective treatments worldwide.” Early on, through our email community and by attendance at global meetings, we began to expand our network. In 2002, when the Life Raft Group received non-profit status, our global reach extended to 13 countries.
We have presented at international forums such as the London Symposium on Glivec and held our first New Horizons meeting. Our first country coordinator was from the United Kingdom, and we established an alliance with the Max Foundation, helping to seed the beginnings of our Global GIST Network. We have supported global advocacy issues, aiding in campaigns to have treatments approved in several countries and directly impacting legislative issues.
Today, we aid patients from the United Kingdom to India and Kenya, helping wherever GIST patients are in need. Our patient registry staff interacts with global patients daily. The LRG Patient Registry has members from 63 countries, with country liaisons from 62 countries.
View list of global representatives here.
We gather global GIST advocates for the annual New Horizons meeting to unify and support patient advocacy efforts and to hear the latest updates in GIST research.The LRG is currently involved in a major effort in Latin America, harnessing the power of real world data through our Salud con Datos project. Also, in Latin America, the LRG collaborates with Alianza GIST.
We will work tirelessly to assure that GIST patients across the world have access to the best possible treatment.
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