SPAEN Newsletter No 1/2020

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Sarcoma Patients EuroNet - Newsletter No. 1/2020

Dear SPAEN members and friends!

It’s a very strange time we are currently living in – characterized by a lot of uncertainty and questions, a lot of fear for our and other’s health, by anxiety about the future. We at SPAEN don’t have the answers, but we know that a lot of people out there have to deal with a lot more than just “staying at home”: people with cancer, especially rare cancers as sarcomas, still need treatments, follow-up check-ups, consultation with their doctors. And new patients are diagnosed every day. All of this in the midst and despite the COVID-19 crisis.

We at SPAEN keep on working for you! So does the medical staff dedicated to sarcoma and GIST management. Researchers are still working to find answers, doctors still consult with their patients and conduct necessary treatments. Our national member groups can be reached and answer questions and help attend to the patients’ needs.
Corona patients and those who have lost their lives to the disease are in our hearts and thoughts. We are most grateful to the doctors and nursing staff for their dedication and ongoing commitment. We also applaud our national groups for keeping up their valuable work and help support and give stability for patients! We can only overcome these times together and in unison!

To offer you some additional help, we’ve put together a list of (selected) links with information and resources about COVID-19 on our website. You can find it here.

We’ll keep on working and fighting, because “Together we can make a difference for those affected by sarcomas” – even in times like these!

Be safe and be positive!

The SPAEN Board of Directors & Team
News from SPAEN

ESMO Sarcoma & GIST Symposium, February
3-5, 2020, Milan, Italy

The ESMO Sarcoma & GIST Symposium is a highly specialized meeting bringing together the most brilliant medical minds working on these tumor types. The Symposium is known as the place of choice for international networking and collaboration, featuring discussions with the key opinion leaders in these rare sub-entities.

SPAEN had the opportunity to open the ESMO Sarcoma & GIST Symposium 2020 with a session on the power of collaboration of patient groups and experts – because we believe that in working together, we can achieve so much more!

Interested in what has been discussed during the medical conference? Have a look here:

- Sarcoma Connect: Highlights from ESMO Sarcoma and GIST 2020
- YouMed International


Fostering Age Inclusive Research


Approximately 15% of sarcomas occur in children and adolescents. But research into teenage and young adult cancers has made slower progress than for any other age group. One reason is that many clinical trials exclude patients under eighteen on the basis of age alone, with no other justification.
SPAEN calls on researchers, regulators, and members of ethics committees to consider adolescent inclusion in adult research when relevant as a trial methodology which offers earlier access to investigational and approved medicines for adolescent patients.
SPAEN is therefore supporting the Accelerate Working Group on Fostering Age Inclusive Research (or FAIR Trials) which has been established to campaign for inclusion. You can find out about the group's work and what you can do to help here.

Medical Updates

FDA approves Tazemetostat in Epithelioid Sarcomas

U.S. Food and Drug Administration (FDA) has granted accelerated approval of tazemetostat (Tazverik®) for the treatment of adults and pediatric patients aged 16 years and older with metastatic or locally advanced epithelioid sarcoma not eligible for complete resection. Basis for the approval was overall response rate and duration of response in a Phase 2 clinical trial.
Tazemetostat is a so-called “epigenic” drug: It targets an enzyme within the cancer cells that is overly active because a gene that usually controls it is gone. While most targeted drugs inhibit enzymes that are overactive because of a mutated gene or because the cell contains too many copies of the gene, Tazemetostat alters the way these enzymes read the DNA instructions for cell division.
The FDA’s approval of tazemetostat is the first approval of an epigenetic drug for a solid tumor. Read more here.
For patients outside the US, the company Epizyme offers Expanded Access – more detailed information can be accessed here.


Now published in EJC: “The Management of Desmoid Tumors: A joint global evidence-based consensus guideline approach


This paper provides an evidence-based, joint global consensus guideline approach to the management of desmoid tumors (aggressive fibromatosis) focusing on molecular genetics, indications for an active treatment, and available systemic therapeutic options.

This paper follows a one-day consensus meeting held in Milan, Italy, in June 2018 under the auspices of the European Reference Network for rare solid adult cancers, EURACAN, the European Organization for Research and Treatment of Cancer (EORTC) Soft Tissue and Bone Sarcoma Group (STBSG), as well as Sarcoma Patients EuroNet (SPAEN) and The Desmoid Tumor Research Foundation (DTRF). The meeting brought together over 50 adult and pediatric sarcoma experts from different disciplines, patients and patient advocates from Europe, North America and Japan.

The paper is open access and can be read here.
News from the Sarcoma Community

Rare Cancer Agenda 2030

Rare cancers are associated with a number of issues typical for rare diseases. The “Joint Action of Rare Cancers” (JARC) has published the “Rare Cancer Agenda 2030”. It is the aim and hope to make those recommendations instrumental to the policy agenda on rare cancers in the European Union for the years to come.
Read the Rare Cancer Agenda 2030 here.


Webinar for Healthcare professionals: Sarcoma and Covid-19

In the context of the “COVID-19 Clinical Management Support System” launched by the European Commission, the Directorate-General for Health and Food Safety (DG SANTE) organises a series of webinars to support clinicians and other healthcare professionals at the frontline of the care of COVID-19 patients.

The first webinar will take place on Monday 20 April, 18.00-19.00 CET and will be on: “Sarcoma and COVID-19”. It will chaired by some of the finest experts in Sarcoma in the EU that are members of the European Reference Network EURACAN: Dr Jean-Yves Blay, Dr Paolo Casali, Dr Silvia Stacchiotti , Dr Javier Martin and Dr Robin Jones. The speakers will share their expertise and recommendations in the clinical management of COVID-19 patients suffering of Sarcoma and covering very concrete and practical aspects.

Please note: This webinar is not a patient webinar, but intended for healthcare professionals only!

If you are interested to join, please send an email to for dial-in information.



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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