SPAEN Newsletter February 2012


Newsletter 1/2012 - 01 February 2012

Dear Readers,

Welcome to the first edition 2012 of the Sarcoma Patients EuroNet e.V./Assoc. (SPAEN) Newsletter.

2012 will once again be a busy year for SPAEN, as we plan to be represented at several different conferences and workshops, contributeto the FP7 project, “EUROSARC”, as well as pursueour ambitions to support the advocacy work of our members and to give them the assurance that there is pan-European support for their work. SPAEN is planning the 3rd SPAEN Annual Conference for Sarcoma, GIST and Desmoid groups in November 2012.

This edition includes latest medical spotlights, a summary of the 2nd SPAEN Annual Conference, News from the SPAEN Community as well as an outlook on the upcoming events of interest for the Sarcoma Community.

If you come across interesting items that are of benefit to the SPAEN community, please do send articles, news, planned events, interesting facts and information to the email at: This email address is being protected from spambots. You need JavaScript enabled to view it.

Enjoy reading!

Best wishes,

The SPAEN Board of Directors and Staff


The Combination of Surgery and Imatinib in GIST: A Reality for Localized Tumors at High Risk, an Open Issue for Metastatic Ones
A review paper by Alessandro Gronchi MD and Chandrajit Raut MD MSc has been published at the end of December 2011 called "The Combination of Surgery and Imatinib in GIST: A Reality for Localized Tumors at High Risk, an Open Issue for Metastatic Ones" (Ann Surg Oncol DOI 10.1245/s10434-2191-4). This review was written in response to a paper which came out by Wang et al. in the same publication (Ann Surg Oncol DOI 10.1245/s10434-011-2190-5), entitled “Phase II Trial of Neoadjuvant/adjuvant Imatinib Mesylate for Advanced Primary and Metastatic/recurrent Operable Gastrointestinal Stromal Tumors: Long-term Follow-up Results of Radiation Therapy Oncology Group 0132”. The paper by Wang et al. is a long term follow up of a study that commenced before many of what have become standard practices had been established, and so this review by Gronchi Raut summarises current standard practices regarding the combination of surgery and imatinib for high risk or metastatic GIST.

Read a summary of the review paper here.

See the full paper online:

Research on prediction of metastatic relapse in GIST patients with intermediate risk

The importance of KIT and PDGFRA mutations in the oncogenesis of gastrointestinal stromal tumors (GISTs) is well established, but the genetic basis of GIST metastasis is poorly understood. This research led by Dr. Frederic Chibon may help determine which intermediate risk GIST patients are in fact at significant risk, and perhaps be used to identify which of them need adjuvant therapy. It also does underline the need for mutation analysis.

See the article at AACR online :

Incidence of Sarcoma Histotypes and Molecular Subtypes in a Prospective Epidemiological Study with Central Pathology Review and Molecular Testing

The exact overall incidence of sarcoma and sarcoma subtypes is not known. The objective of the present population-based study was to determine this incidence in a European region (Rhone-Alpes) of six million inhabitants, based on a central pathological review of the cases. The study shows that sarcoma is more common than typically stated, and conforms that GIST is the most frequent sarcoma.

Methodology/Principal Findings: From March 2005 to February 2007, pathology reports and tumor blocks were prospectively collected from the 158 pathologists of the Rhone-Alpes region. All diagnosed or suspected cases of sarcoma were collected, reviewed centrally, examined for molecular alterations and classified according to the 2002 World Health Organization classification. Of the 1287 patients screened during the study period, 748 met the criteria for inclusion in the study. The overall crude and world age-standardized incidence rates were respectively 6.2 and 4.8 per 100,000/year. Incidence rates for soft tissue, visceral and bone sarcomas were respectively 3.6, 2.0 and 0.6 per 100,000. The most frequent histological subtypes were gastrointestinal stromal tumor (18%; 1.1/100,000), unclassified sarcoma (16%; 1/100,000), liposarcoma (15%; 0.9/100,000) and leiomyosarcoma (11%; 0.7/100,000).

Conclusions/Significance: The observed incidence of sarcomas was higher than expected. This study is the first detailed investigation of the crude incidence of histological and molecular subtypes of sarcomas.

See the full paper online:


Dr. Brian Druker honored with Japan Prize

Oregon Health Science University congratulates Brian J. Druker, M.D., who has been awarded the 2012 Japan Prize in Healthcare and Medical Technology for his pioneering role in targeted cancer drugs. The Japan Prize is considered one of the world's most prestigious awards in science and technology. Druker's research proved it was possible to shut down cells that enable cancer to grow without harming healthy ones – a discovery that helped make once-fatal forms of the disease manageable.

"On behalf of all OHSU employees, I extend our congratulations to Brian," said OHSU President Joe Robertson, M.D., M.B.A. "Brian's brilliance, hard work and dedication have impacted millions of lives. Though he has already achieved great things, Brian has maintained his fierce determination to make cancer a disease we no longer have to fear. It is impossible to not be inspired by him and want to be a part of his important mission to end cancer as we know it."




Nearly 100 participants attended the 2nd SPAEN Annual Conference for organizations representing patients with Sarcomas inclluding GIST or Desmoid-Tumours held in Berlin. This large attendance documents the increasing interest in the disease group of Sarcomas, which has been 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 acquire new skills and knowledge about the diagnosis and treatment of Sarcomas. Leading European Sarcoma Experts joined the conference to provide latest medical updates on treatment options and clinical trials in Sarcomas. Furthermore the conference aimed to foster networking across borders between patient group representatives, as well as sharing best practice to enhance their daily work as patient advocates.

Among the topics of the 2nd SPAEN Conference were:

  • Understanding the results in clinical trials, aspects of Quality of Life, Managing life with and after cancer
  • Ask the expert session about "Understanding Sarcomas" with leading European Sarcoma Experts
  • Parallel Sessions on GIST (Therapy Management and Compliance, Paediatric GIST, New Treatment Options), Sarcomas (Management of Advances Sarcomas, New agents and clinical trials) and Desmoids (Molecular Genetics, Treatment Options)
  • Round Table Discussions and Sharing Best Practice Examples of Advocacy work

There was unanimity amongst delegates that the SPAEN Conference 2011 was a success. During the conference there was a common feeling between patient advocates, sarcoma experts and the industry, that together research in Sarcomas can be completed more quickly and new treatments can be introduced faster. The growing commitment of industry to sarcoma in recent years is shown by the improving number of treatments that is now available, either already licensed or in clinical trials. We continue to encourage industry to consider patient needs paramount even though commercial considerations might make rarer cancers low priority.

The conference engendered a a high level of commitment in all - whethera patient advocate, a clinical expert or a industry representative, toplay a part in “Changing the World” and makinga difference to the plight of Sarcoma patients. On reflection e realised that in 2002 there were only six multicentre clinical trials in Europe for sarcomas, whereas today there are 20. So, indeed, the world is changing, little by little – and the situation for the Sarcoma Patient Community IS getting better!

See the SPAEN website for the conference programme, a photogallery and presentations.

A collection of statements of conference delegates and the faculty can be found at:

The 3rd SPAEN Conference will be held from 22. – 24.11.2012. Please save the date!


In November 2011, the twelfth EDI film prize ( for the best advertising, industrial and corporate films was awarded and the documentary film "Living with GIST" won the EDI 2011 Silver Medal. The price was awarded to Helga Meier Schnorf and Dr. Michael Montemurro of the GIST Group Switzerland.

The Jury’s summary: „This film achieves a confident balance between emotion and information and centres on the message of a difficult subject. It neither tugs at the heart strings nor loses its way amid technical details. The film succeeds in keeping this quality for 50 minutes”.

Using patient histories from real life, "Living with GIST" impressively illustrates the path from the correct diagnosis to therapy and dealing with the disease and with cancer. It also throws light on the worldwide network of patients and physicians and their cooperation across medical disciplines and in research. Yet the patient is always the focal point of the documentary. Photo from the right: Martin Wettstein, Helga Meier Schnorf, Dr. Michael Montemurro (GIST Group Switzerland).

The trailer of the film with English subtitles is available on YouTube.

The GIST Group Switzerland awarded its Science Prize for the second time

This year's recipient of the Science Prize awarded by the GIST Group Switzerland was the Swiss pathologist Prof. Stephan Dirnhofer, who won the prize for his important work on the pathogenesis of GIST at the University of Basel's Institute of Pathology. Dr. Michael Montemurro and Helga Meier Schnorf, who made the documentary film "Living with GIST", won the Special Recognition Award.

The Gastrointestinal Stromal Tumors (GIST) Patient Support Group, the GIST Group Switzerland, awarded its Science Prize for the second time. This year's recipient of the GIST prize (10,000 Swiss Francs) is Prof. Stephan Dirnhofer, Deputy Head of the Institute of Pathology at the University of Basel (in the middle on the photo). The prize was conferred for his publication "Frequency, phenotype, and genotype of minute gastrointestinal stromal tumors in the stomach: anautopsy study", published this year in the journal Human Pathology. The award ceremony took place on the 24 November at the semiannual meeting of the Swiss Group for Clinical Cancer Research (SAKK), held in Basel.

The jury, headed by Prof. Urs Metzger, voted unanimously in favor of this decision. GIST is a very rare cancer of the gastrointestinal tract that occurs in 10–15 people per one million inhabitants per year. In their investigation, the authors discovered a so-called mini-GIST in 2.9 percent of the cases studied, i.e. in 17 of 579 autopsies. This is still well below the rate of 20–30 percent that has been published by other authors in smaller-scale studies. Together with the extensive molecular genetic investigations, these findings provide important insights into the molecular mechanisms leading to GIST. The jury was impressed not only by the indisputable quality of the work submitted but also by Prof. Dirnhofer's commitment to the study of this rare disease. In the past seven years, he has published ten papers on this topic that are listed in Medline, eight of them containing original research. GIST is a sarcoma, a group of malignant tumors that occur in connective tissue, bones and muscles. As a non-profit organization, SAKK also conducts studies on such rare forms of cancer.


Since its founding in 2004, the Liddy Shriver Sarcoma Initiative has had an international focus. Back then, they started by publishing the “Sarcoma Facts” in five languages when launching the website. Today the „Sarcoma Facts“ are listed in twenty-three languages. The Liddy Shriver Sarcoma Initiative 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.

Please see the SPAEN website for the full summary oft he international activities oft he Liddy Shriver Sarcome Initative.


The Liddy Shriver Sarcoma Initiative

Bruce Shriver, (Founder) Beverly Shriver, (Founder)
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GIST Support International provides international Listserv for Paediatric and Wildtype GIST

GIST Support International (GSI) has set up an email listserv dedicated specifically towildtype gastrointestinal stromal tumor (GIST) inpatients of any age, plustheir family and friends. To join the list please click here.

Wildtype GIST means GIST without muations in the genes for KIT or PDGFRA. Almost all GIST in patients younger than age 21 is wildtype, as well as a large percent of GISTin patients younger than 40, and about 10% of GIST inolder adults.

Patients, family members, caregivers, riends, and interested others are welcome to join! Our aim is to provide patients support and a place to talk and exchange useful information about wildtype GIST and its treatment.




The Patient Advocacy/Ethics Track at the 2011 European Multidisciplinary Cancer Congress in Stockholm was once again an overwhelming success. ECCO’s Patient Advisory Committee devised an innovative and comprehensive programme aimed at all stakeholders in oncology.

New and unique for 2011 was the Court Room Trial Session with Patient Information on Trial.
To view the webcasts of the sessions see below:


In a unique partnering of oncologists, patients and patient advocacy groups, ESMO has produced a booklet called: A guide for patients with advanced cancer, how to get the most our of your oncologist. The booklet is designed to help patients with advanced cancer and their treating oncologists.

For patients and their family members, it provides practical advice regarding cancer care, communicating with oncologists, important questions to ask, getting information and the challenges of living with an advanced cancer.

For practising oncologists, the guide will serve as a tool to help focus important discussions with their patients and to assist in addressing the many issues their patients are confronting.

SPAEN has reviewed and endorsed the guide. Download your free copy of the booklet now at:


4 February 2012 - World Cancer Day,

World Cancer Day takes place every year on 4 February and is the singular initiative under which the entire world can unite together in the fight against the disease. World Cancer Day 2012 is particularly important as it falls almost half a year after the first UN High-level Meeting on Non Communicable Diseases (NCDs), and the signing of the Political Declaration supporting prevention and control of these devastating conditions, including cancer.

World Cancer Day 2012 has been themed ’Together it is possible’ because it is only by every person, organisation, government individually doing their part that the world will be able to reduce premature deaths from cancer and other NCDs by 25% by 2025.

ESMO Rare Cancer Conference: Improving the methodology of clinical research, 10 Feb 2012, Brussels, Belgium

The European Society for Medical Oncology and Rare Cancers Europe have joined forces to present the first Conference addressing the scientific and educational needs of relevant stakeholder groups concerning challenges and potential solutions in the field of clinical research on rare cancers.

According to surveillance data from RARECARE,, around 4 million people in the European Union are affected by rare cancers. Despite the rarity of each individual cancer type, rare cancers represent in total about 20% of all cancer cases, including all cancers in children. Rare cancers are classified in the group of rare diseases which is defined in the European Union as diseases with a prevalence of fewer than 5 cases out of a population of 10,000. As such, patients with rare cancers are faced with particular challenges, including late or incorrect diagnosis and difficulties finding clinical expertise and accessing appropriate treatments. In addition, it is difficult carrying out clinical studies due to the small number of patients, there is a possible lack of interest in developing new therapies, a high level of uncertainty in clinical decision-making, and the scarcity of available registries and tissue banks.

About Rare Cancers Europe

Rare Cancers Europe is a multi-stakeholder initiative addressing specific challenges posed by rare cancers. It is based on a partnership between the European Society for Medical Oncology (ESMO), the European Organisation for Rare Diseases (EURORDIS), the European Cancer Patient Coalition (ECPC), the European Organisation for Research and Treatment of Cancer (EORTC), CONTICANET, EuroBoNeT, the Association of European Cancer Leagues (ECL), the Chronic Myeloid Leukaemia Support Group, the International Brain Tumour Alliance (IBTA), Orphanet, the Chronic Myeloid Leukaemia Advocates Network, GIST Support UK PAWS-GIST, the Fondazione IRCCS Istituto Nazionale dei Tumori, the European Institute of Oncology (IEO), the European Society for Paediatric Oncology (SIOP Europe), the European School of Oncology (ESO), the European Oncology Nursing Society (EONS), the European Society of Pathology (ESP), Novartis Oncology (initiating sponsor and sustaining industry partner), Pfizer Oncology (sustaining industry partner), and sanofi- aventis (sustaining industry partner). The initiative is moreover supported by additional corporate supporters.

British Sarcoma Group Conference 2012, 29 Feb – 2 March 2012, Oxford, UK

For more information:


Rare Disease Day, 29. February 2012

On February 29, the entire rare disease community will converge to raise awareness about rare diseases and the millions of people affected.

The campaign is coordinated by EURORDIS at the international level and National Alliances of Patient Organisations at the National level. All stakeholders, including health professionals, researchers, government authorities and industry, are invited to participate. You can get involved in many ways. One way is to become a Friend of Rare Disease Day!

Being a “Friend” requires limited commitment to the Rare Disease Day campaign and acknowledges the fact that not everyone can give the same level of time and effort. In order to be a Friend, you need to link your website to . Friends are also strongly encouraged to organise or participate in an awareness-raising activity and to relay the EURORDIS press release and/or their National Alliance press release to their media contacts. Friends of Rare Disease Day can also post the Rare Disease Day logo on their website. The Rare Disease Day website will display the list of people and organisations who have signed up as a “Friend of Rare Disease Day.” This list will be updated on a daily basis in the weeks preceding Rare Disease Day, in order to show a growing list of sympathizers and build momentum.

ESMO GIST and Sarcoma Conference, 9-10 March 2012, Milan, Italy

Following on from three successful editions, the fourth ESMO Conference on Sarcoma and GIST will provide a wide-ranging overview of current medical therapy of soft tissue sarcomas and GIST.

The goal is to provide a comprehensive overview of current medical therapy of soft tissue sarcomas and GIST, with a focus on both multidisciplinary clinical approach and molecular and pathological bases of these diseases.

The audience will take home an updated overview of where we are with soft tissue sarcomas and GIST and where we are going, thanks to a top-level faculty including the major clinical and translational experts from the worldwide sarcoma community.

EORTC 50th anniversary, 15-16 March 2012, Brussels, Belgium

The EORTC will be celebrating its 50th anniversary on 15-16 March 2012. On this occasion, EORTC will be hosting a conference in Brussels promoting EORTC research and achievements that have changed medical practice for the benefit of all cancer patients.

EORTC believes patients involvement in clinical trials is of outmost importance. Therefore, we would like to invite patient advocates to participate in the EORTC 50th anniversary celebration. There will be a presentation given by a patient and we encourage you to attend the rest of the meeting as well.

Indeed, this event will be a unique opportunity to be acquainted with the latest developments, progress made and current challenges of cancer research, but also a perfect place for patients to meet all EORTC partners, e.g. national research organizations, health authorities, patient advocacy groups, cancer leagues, the European Commission, the pharmaceutical industry and all contributors who have been involved in EORTC activities.

There is no registration fee to attend the conference. However, registration is mandatory for logistics and security purposes via the following link:

You will find the full program on the EORTC website:


EMSOS Meeting, 14. - 16. Mai 2012 in Bologna, Italy


ASCO 2012 Annual Meeting of the American Society of Clinical Oncology, 01. - 05. June 2012 in Chicago, US

ESSO Congress (European Society of Surgical Oncology), 19 - 21 Sep 2012 in Valencia, Spain

The theme of the ESSO 32 Congress is Individualising Cancer Surgery and the format is designed to promote the highest standards of surgical care in the management of patients with solid tumours. This highly regarded Surgical Oncology Congress provides the perfect platform for participants to exchange and debate the very latest in cancer patient treatment and care. With over 800 delegates from 60 countries, up to 100 invited leading cancer experts and a venue on the beautiful Mediterranean coast, the ESSO 32 Congress has all the ingredients for an outstanding scientific, educational and social event.

9th ESMO Patient Seminar (29/30 Sep 2012) during the ESMO Congress, 28 Sept - 02 Oct 2012 in Vienna, Austria

The 9th ESMO Patient Seminar, dedicated to cancer patients, family members, representatives of cancer leagues and patient groups, will open on Saturday afternoon, 29 September, with welcome speeches and keynote lectures, followed by a full day of sessions on Sunday, 30 September 2012. The Seminar will cover a wide range of subjects, with the aim of encouraging direct interaction and communication between oncology patients and healthcare professionals. and

CTOS-Meeting, 14 - 17 November 2012 in Prague, Czech Republic


3rd SPAEN Annual Conference of Sarcoma, GIST and Desmoid Patient-Groups, 22 – 24 November 2012 in Florence, Italy




The European Network of Sarcoma Patient Advocacy Groups

European GIST, Desmoid and Sarcoma advocacy and support groups have agreed to form the collaborative association Sarcoma Patients EuroNet. SPAEN was officially founded on the 6th of April 2009 in Bad Nauheim/Germany. SPAEN is an European association – legally registered under German law. The association has some short term goals and some long term ambitions, and is supporting the growing pressure for better treatment of rare cancers being led by groups such as RARECARE, EURORDIS, ESMO and ECPC. The organization has already started its work with the aim of extending information services, patient support and advocacy so that patients across the whole of Europe can benefit. Acting in partnership with experts, the healthcare industry and other stakeholders, SPAEN will work to improve treatment and care of GIST, Desmoid and sarcoma patients in Europe through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.


Roger Wilson (SPAEN President)

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Estelle Lecointe (SPAEN Vice-President)
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Markus Wartenberg (SPAEN Financial Director)

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Barbara Dore (SPAEN Secretary)
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SPAEN Secretariat

Michaela Geissler (Senior Project Manager)

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