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.
International News and Videos
Nutritional status plays a very important role in the prevention and treatment of contagious and non-contagious diseases. In the frame of a health contingency, the use of strategies that strengthen our nutritional status and immune system is essential.
Nuestro colaborador global, Alianza GIST comparte el artículo "El tratamiento de pacientes con cáncer y la contención de COVID-19: experiencias de Italia "por el Dr. Giuseppe Curigliano publicado en el ASCO Daily News. Este artículo también está disponible en inglés.
Dr. Breelyn Wilky, Director of Sarcoma Translational Research at the University of Colorado Cancer Center shares about Cancer vs. Coronavirus in her latest blog post covering hospital visits, keeping appointment scans, and risk factors for GIST patients.
I was a piano teacher and performing pianist for the past 13 years but stopped work completely this year so I could spend more time with Andrew and see to his needs. We were so lost in the beginning because we did not know what to expect, due to the relative rarity of GISTs.
The Life Raft Group is pleased to announce the official establishment of our Regional Patient Registry, a partnership with Latin America, which will collect medical history and treatment information from more than 600 GIST patients who are represented by Fundación GIST Mexico, Fundación GIST Chile, and Pontificia Universidad Católica de Chile.
Participación de los pacientes en el “Tour de abogacía por la participación de los pacientes en la toma de decisiones en políticas públicas de salud.”
Collaboration among patient groups and working together in setting common goals is vital. Together we can have a stronger voice to achieve our participation in the decision-making on health issues.
Patient Support Group meeting on GIST Awareness Day in Mumbai, India, 2019.
GIST Awareness Day in Argentina, Guatemala, Honduras, and Peru, 2019. GAD began in 2014 by The Life Raft Group, to raise awareness on GIST worldwide.
GIST Awareness Day in Mexico, 2019. GAD began in 2014 by The Life Raft Group, to raise awareness on GIST worldwide.