SPAEN Newsletter No 2/2020

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Sarcoma Patients EuroNet - Newsletter No. 2/2020

Dear SPAEN members and friends!


July is Sarcoma Awareness Month in the USA and other countries. But for patients, every month is Sarcoma Awareness Month! We have been reminded of this quite harshly when we lost our dedicated board member Dr. Nikhil Guhagarkar to GIST in late May. Nikhil was a role model in advocacy and a shining example of what we can achieve through patient advocacy.

We at SPAEN will continue to work for a better situation for sarcoma, GIST, bone cancer and desmoid patients in memory of Nikhil and all those who have lost their lives to these diseases. Together with our member groups, patients and advocates, experts and healthcare professionals - during Sarcoma Awareness Month and every other month! Please stay active for all patients around the globe! 

The SPAEN Board of Directors & Team
News from SPAEN

SPAEN Advocacy in Action Award: Winners 2019 & Announcement 2020

Patient advocacy is so important: It ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs.

We want to honor the great initiatives, activities and campaigns that are being done for sarcoma patients around the world by our member groups – your work is amazing!

Please make it seen and acknowledged across country borders – and apply now for our “SPAEN Advocacy in Action Award 2020”.
And get inspired by our 2019 winners and their projects:
1. Desmoid Foundation Italy for “A bridge for Desmoid Tumor
2. Friends of Max, India, for "Chai for cancer"
2. Sarcoma UK for "The Accidental Activist"
3. The Bone Cancer Research Trust (BCRT) for the "Bone Cancer Conference"
Find out more on our website.
Congratulations again to the 2019 winners and all award entries!


SPAEN like to welcome our new members 2020


Coronavirus pandemic: Information, resources and positive sign for patients

The coronavirus pandemic has affected almost the whole world – our lives as we knew them basically came to a halt. However, many of our member groups kept up their valuable work for GIST, sarcoma and desmoid patients in their countries – no matter the costs, obstacles or difficult circumstances, they were and are #HereForYou, for our patients!

We appreciate this immensely! Take a look at the messages, many of our national GIST, sarcoma and desmoid groups have for their patients!

Information and resources


It is assumed that cancer and its treatment can lower your ability to fight the coronavirus infection. We have therefore put together information and resources about the coronavirus in general and especially for cancer patients, including specific (though very limited) information for sarcoma and GIST patients. Please find it here.

List of Sarcoma Centers: Experience mandatory


Sarcomas are rare and difficult to diagnose and treat. Therefore, it is essential that they are managed in expert centers. But where can I find a specialized sarcoma center? We’ve put together a list of experienced centers in a number of countries (not exclusive) here.

If you have a suggestion of a center to be added, please get in touch with us:

Medical Updates

Telemedicine during the COVID-19 Pandemic in the UK

Many patients with cancer, often those with rare cancers such as sarcomas, travel long distances to access expert care. The COVID-19 pandemic necessitated widespread changes in delivery of cancer care, including rapid adoption of telemedicine-based care. This study evaluated the impact of telemedicine on patients, clinicians, and care delivery at the Royal Marsden Hospital (RMH) Sarcoma Unit, London, UK, during the pandemic.

GIST: 3 years of adjuvant imatinib improves survival


Three years of adjuvant imatinib improves survival in GIST patients with localized disease and high risk of recurrence compared to one year of adjuvant treatment. PD Dr. Peter Reichardt, Germany, presented the 10-year follow-up data as part of the ASCO20 Virtual Scientific Program.

Avapritinib shows no benefit vs. regorafenib in 3rd and 4th line GIST


The phase III study Voyager did not meet the primary endpoint of an improvement in progression-free survival for Avapritinib versus regorafenib in patients with 3rd or 4th-line GIST. However, the medication remains a highly effective treatment for Exon 18 D842V-mutated GIST that are known to be insensitive to imatinib or any other available medication: Read more here

Ripretinib shows benefit in advanced, pre-treated GIST

Ripretinib significantly improved progression-free survival compared with placebo in patients with advanced GIST. A phase III trial. Read more here.

Blood samples to detect current mutations?

Can the testing of blood samples (circulating tumour DNA – ctDNA) reveal current mutations in metastatic GIST? A recent, retrospective analysis confirms that. Researchers recommend to study this prospectively.

Positive opinion for ADP-A2M4 for orphan drug designation in the EU

ADP-A2M4 is a novel treatment currently being tested in a phase II study in advanced synovial sarcoma and MRCLS. Read more about the European Medicine Agency’s (EMA) course and find out more about the study

Ewing sarcoma family of tumours: EuroEwing 2012 protocol

Although there have been multiple trials in newly diagnosed Ewing sarcoma family of tumours (ESFT), the standard treatment of ESFT is not defined internationally, and there is a need to add new agents other than conventional chemotherapy to improve outcomes. This study tries to establish which is the “standard regimen” of chemotherapy. Find out more about it. Find a summary of the study for patients here

Metastatic Soft Tissue Sarcomas in Adolescents and Young Adults

Soft tissue sarcomas (STS) account for 8% of all cancers in adolescents and young adults. Metastatic STS contribute significantly to disease-related mortality in this age group; however, data are limited due to under-representation in clinical trials. A Specialist Center Experience

Metastatic Soft Tissue Sarcomas in Adolescents and Young Adults

Approaches to advanced soft tissue sarcomas: This paper provides an update of current approaches to advanced STS management, including case studies to illustrate the role of trabectedin in advanced STS management. (Not open source). 
News from the Sarcoma Community

Dr. George Demetri receives 2020 David A. Karnofsky Memorial Award

George D. Demetri, MD, Harvard Medical School, USA has been named the 2020 David A. Karnofsky Memorial Award recipient for pioneering the development of targeted kinase inhibitors (including imatinib, sunitinib, and regorafenib) for GISTs and for his role in the development of several other therapies for sarcomas.

“On behalf of SPAEN, our member organizations and all GIST and sarcoma patients, we congratulate Prof. Demetri on this so well-deserved award. We thank Dr. Demetri for his tireless research efforts in a rare group of diseases such as GIST and Sarcomas. Thanks also for his continued support to our patients and his engaged collaboration with patient organizations across national borders.”
Markus Wartenberg, Chair/President of SPAEN Sarcoma Patients EuroNet Assoc.

Read an interview with George Demetri in the ASCO Daily News here

Sarcoma Webinar Series

This webinar series aims to provide the sarcoma community with an avenue to hear about the latest scientific advances from experts in the field. While this series is primarily aimed at the scientific and clinical community, it is an open meeting for all those who are interested in learning more about sarcomas. Organized by Paul Huang, The Institute of Cancer Research and Priya Chudasama, German Cancer Research Center. Read more here.

WECAN Virtual Resource Center

During this COVID-19 crisis, WECAN supports the cancer patient advocacy community in coping with the impacts of this pandemic on their important advocacy work: The network provides this WECAN Virtual Meeting Resource Center knowledge, guidance and checklists for patient organizations to run virtual meetings.

The Angiosarcoma

Despite rare cancers accounting for 25% of adult tumors, they are difficult to study due to the low disease incidence and geographically dispersed patient populations, which has resulted in significant unmet clinical needs for patients with rare cancers. The Angiosarcoma Project assessed whether a patient-partnered research approach using online engagement can overcome these challenges. Read more.



  • SELNET Consortium Virtual Meeting
  • New Horizons GIST 2020: 10-12 September, will be virtually.
    More information will be shared soon
  • European Society for Medical Oncology (ESMO) Annual Meeting, September 18-22, 2020, held virtually:
  • Leiomyosarcoma Research Roundtable: October 3, 2020, will be held virtually
  • Connective Tissue Oncology Society (CTOS): Annual Meeting, November 18-21, 2020, held virtually:
  • European Musculo-Skeletal Oncology Society (EMSOS): Annual Meeting, December 16-18, 2020, Graz, Austria:
  • SPAEN Annual Conference 2021: April 2021, more information will be shared in due course




Sarcoma Patients EuroNet Association (SPAEN), the international Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups, was founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe and internationally. Acting in partnership with clinical experts, scientific researchers, industry and other stakeholders SPAEN is working to improve the treatment and care of sarcoma patients through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public.
Together We Can Make A Difference
For Those Affected By Sarcomas!

SPAEN Secretariat
Am Rothenanger 1b, 85521 Riemerling, Germany
Tel: +49 89 62836807, Fax +49 89 62836808

SPAEN Communications
Kathrin Schuster

SPAEN Registered Office:
Untergasse 36 * 61200 Wölfersheim/Germany

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