The campaign Rare Cancers Europe has been developed by ESMO in collaboration with major European stakeholders in rare cancers and rare diseases to address challenges and propose solutions to eliminate the hurdles that patients with rare cancers, researchers, medical professionals and the pharmaceutical industry working in this field face every day. Rare Cancers Europe (RCE) has been established as a partnership of cooperating organisations that work together to place the issue of rare cancers firmly on the European policy agenda, to identify and promote appropriate solutions and to exchange best practice. SPAEN has now been welcomed into the partnership initiative. http://www.rarecancerseurope.org
SPAEN regrets the released information from AB Science: “Masitinib significantly extends overall survival as second-line drug for GIST…”
On the 1st of February 2012 the “Global GIST Community” was confronted by a press release from a pharmaceutical company named AB Science to the financial media and a supporting Email “Late Breaking News” from the Life Raft Group (NJ, USA) to the GIST Patient Community. During the following days, leading GIST Experts and GIST Patient Groups around the world clearly expressed their concern about the content of this press release and manner of its delivery.
Review paper "The Combination of Surgery and Imatinib in GIST: A Reality for Localized Tumors at High Risk, an Open Issue for Metastatic Ones"
The Liddy Shriver Sarcoma Initiative publishes accurate and timely information about the diagnosis and treatment of sarcomas in ESUN, its online, peer-reviewed newsletter. Recently they have published the ESUN Guide for the Newly Diagnosed. The ESUN Sarcoma Guides have been reviewed by sarcoma experts and published as eBooks for easy access on-the-go. The books can be saved and printed for individual use.
2nd SPAEN Conference 2011 held at 17. – 19. November 2011 in Berlin (Germany)
Nearly 100 participants who attended the 2nd SPAEN Annual Conference for organizations representing patients with Sarcomas incl. GIST or Desmoid-Tumours held in Berlin, documented the increasing interest in the disease group of Sarcomas, which is in many European countries a ‘forgotten cancer’, because it is one of the rarest forms of cancer. Among the participants were more than 55 representatives from Sarcoma Patient Advocacy Groups from 14 countries, several European Sarcoma Experts and industry representatives. The meeting focused on research and treatment for Sarcomas and advocacy/capacity building for Sarcoma Patient Groups. The main aims of the conference were supporting patient advocates to develop new knowledge and skills about the diagnosis and treatment of Sarcomas and discussing and sharing best practice to enhance their daily work as patient advocates.
The film “Living with GIST” from the Swiss GIST group wins a Silver Edi. On 3rd November 2011, the twelfth Edi film prize for the best advertising, industrial and corporate films in Switzerland was awarded. The film won in the “Corporate: Internal Communication Training” section.
This film shows the way from a correct diagnosis to treatment and dealing with the rare cancer GIST through different patient stories. It is focussing on the global networking of patients and physicians and the collaboration of various medical disciplines and research. The focus of all these efforts is the patient. Three patients are talking about their fate, their lives and their cancer journey. The trailer of the film with English subtitles is available on YouTube.
Since its founding in 2004, the Liddy Shriver Sarcoma Initiative has had an international focus. Back then, we started by publishing the “Sarcoma Facts” in five languages when we launched our website. Today we list them in twenty-three languages. We also employed the slogan “Sarcoma Knows No Borders,” because it is a disease that can be found anywhere in the body and everywhere in the world. We want our efforts to include all those affected by sarcoma and everyone who works to help those with sarcoma. Read more about our efforts and their international focus.