International support for the GIST Patient Community continues to grow. In this article, Amy Bruno-Lindner reports on GIST Support Austria.
Since the summer of 2013, GIST patients in Austria have had someone to turn to when they need information and support. That’s when GIST Support Austria was founded by two GIST patients and a caregiver: Amy, Barbara, and Rainer.
When Amy received her diagnosis of advanced GIST in July 2011, one of the first things she did was to turn to the internet. “The webpage and the listserv of the Life Raft Group answered so many of my questions and made me feel like I was part of a larger international patient community,” she recalled. It was clear for her that she also wanted to join an Austrian community of GIST patients, but at that time there were none. Encouraged by her oncologist, Austria’s prominent GIST specialist, Dr. Thomas Brodowicz of the General Hospital in Vienna, Amy contacted Rainer and Barbara, who had also been thinking about founding a patient group – GIST Support Austria was born.
“From the very beginning, one of our goals was to try and reach GIST patients all over Austria. We thought it would be most effective if we went to the treatment centers in different parts of country, talked to the oncologists personally and tried to organize local patient meetings, “Rainer stated. Since the group’s founding, they have held several informal patient get-togethers in different Austrian provinces – often in convivial settings, like traditional Austrian wine-taverns, and with a local GIST specialist in attendance to answer patients’ questions.
The past half-year has been a busy time for GIST Support Austria. Not only did they launch a website for Austrian GIST patients (www.gistsupport.at), but they also organized the annual GIST patient conference at the Vienna General Hospital, which took place in March. Although it was the sixth such conference to be held in Austria, it was a first for the organization. “We were in charge of organizing it – we developed the program, invited the speakers, arranged for catering, and all the rest,” shared Barbara, who spent many hours ensuring that everything ran smoothly. The program included a range of lectures on topics that affect GIST patients and their caregivers directly including basic facts about GIST, side effects management, optimal nutrition, complementary medicine and palliative care.
A special guest from the German GIST group, Das Lebenshaus, Markus Wartenberg, presented important information about the role of clinical trials. Dr. Brodowicz closed the conference with a brief review of new and promising treatments, among them the technique of liquid biopsy, which is still in the development stage.
“I think the conference was a success,“ said Barbara, “because we were able to get our main messages across – that no GIST patient in Austria needs to be alone and that GIST should always be treated by experts.“
The founders of GIST Support Austria are grateful for all the help they have received from the GIST-Gruppe Schweiz and Das Lebenshaus. They have also learned a great deal about patient advocacy from participating in the annual New Horizons conferences, which bring together GIST patient advocates from all over the world.