SPAEN Newsletter No 2/2019

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Sarcoma Patients EuroNet - Newsletter No. 2/2019

Dear SPAEN members and friends!

SPAEN: 10 years of joint global forces in sarcomas
10 years ago, the collaborative association Sarcoma Patients EuroNet (SPAEN) was formed and founded by 11 European GIST, Desmoid and Sarcoma advocacy and support groups. Today, we look back at exciting and amazing 10 years of work, collaboration, laughter and friendships and significant progress in sarcoma management. However, we are aware: There's still lots to do! Read more.
During our 10 years anniversary celebration in October in Madrid, Spain, we awarded our first ever „Sarcoma Lifetime Achievement Awards“ to Roger Wilson and sarcoma experts Professors Jean-Yves Blay, Ian Judson, Peter Hohenberger and Paolo Casali - congratulations to the winners and a huge thank you for the ongoing support and all the work they have done and still do to shape and continuously improve the sarcoma landscape!

We also want to take the opportunity to thank all our supporters - patients, patient advocates, patient organizations, medical experts, representatives of the pharmaceutical industry and anyone interested in sarcomas - for their ongoing and so important commitment!
We are looking forward to continue working side by side with you, because "Together we can make a difference for those affected by sarcomas"!
Want to learn more about SPAEN? Watch our video!
News from SPAEN

Survey: Raise your voice and help us improve sarcoma research


Have your say and change what needs to be improved about diagnosis, treatment and care of people living with or beyond sarcoma, GIST or any other sub-type.
We want to know what the most important questions for sarcoma research are! Have you ever had a question about the diagnosis, treatment, survivorship or end-of-life care of sarcoma and not been able to find out the answer? Are there any aspects of sarcoma which you feel should be addressed by research?
If so, please take part in our survey (and please share it)!
Who can participate?
Anyone who has to do with sarcomas: sarcoma patients, carers, family members, but also any healthcare professionals working with sarcoma patients or researchers. The survey is currently available in English, Dutch, German, Spanish, Italian and French.
Deadline: December 15, 2019!
It is important to us what you think: Your experience with this disease will help us understand where research is needed that will make a difference to people’s lives!

10th SPAEN Annual conference: Registration open

Register now for the 2020 SPAEN Annual Conference, January 31 - February 2, 2020, Milan Mariott Hotel, Milan/Italy.

For the second time, SPAEN and the European Society of Medical Oncology (ESMO) have agreed to combine their meetings: The SPAEN conference will be held just before the ESMO GIST & Sarcoma Symposium (3-5 Feburary 2020, Marriott Hotel Milan). Registration and more information – please have a look here


SPAEN Webinars: Did you miss them?

No problem! Did you know that you can watch all our previous webinars on our Youtube Channel? Watch them here.


The challenge of sarcomas: the patient advocacy group perspective by Roger Wilson

The patient advocacy agenda covers every aspect of cancer treatment and care. This means that this review covers almost everything that patient advocates are involved with, whether locally, nationally or across national borders. This review is subdivided into five main sections with one highlighted advocacy priority. Find out more and read here.


SIOP Europe 2019 / 5th Bone Sarcoma Networking Meeting:

What’s new in Ewing sarcoma and osteosarcoma

The 5th Bone Sarcoma Networking Meeting was held May 23/24, 2019, in Prague, Czech Republic, within the framework of the 1. Annual Meeting of the European Society for Pediatric Oncology (SIOP Europe). It brought together scientific and clinical researchers and representatives from sarcoma charities from Europe and the USA, to present and discuss new developments on bone sarcoma. It highlighted the work and achievements of the Euro Ewing Consortium (EEC) and had an additional focus on osteosarcoma. Curious? Read more here.

The Leimyosarcoma research roundtable

On September 14, 2019, 35 sarcoma experts and researchers assembled at the Sylvester Cancer Center in Miami, Florida, to discuss the current status of treatment and care in leiomyosarcomas (LMS) as well as brainstorm about possible ways to approach LMS in the future.

Find out more about the roundtable and what happened there.

Medical Updates

The challenge of finding new therapeutic avenues in soft tissue sarcomas, by Prof. Bernd Kasper

Systemic therapies for locally advanced and metastatic soft tissue sarcoma have been restricted for decades to very few effective and approved agents. However, new therapeutic avenues including new drug developments and registrations well as numerous clinical trial options have recently enriched the therapeutic armamentarium in the treatment of patients with advanced soft tissue sarcomas. Want to learn more? Read on!

Treatment in specialized centers beneficial

With sarcomas being so rare and difficult to diagnose and treat, it is essential that they are managed in expert centers. To date, there is no comprehensive, international study to show differences in outcomes of patients treated in expert centers vs. other institutions. However, research in France, Spain and the USA proof that patients diagnosed and treated in specialized centers have a lower risk of mortality and better outcomes after surgery (e.g. lower risk of local recurrences). Read more.

Latest publications:

EU Approval for larotrectininb for solid tumors with NTRK gene fusion

EMA’s CHMP recommended granting marketing authorisation in the EU for larotrectinib for solid tumours with Neurotrophic Tyrosine Receptor Kinase (NTRK) gene fusion. This includes certain subtypes of sarcomas e.g. infantile fibrosarcoma:

US Approval for pexidartinib in symptomatic tenosynovial giant cell tumor (TGCT)

The FDA granted approval to pexidartinib (Turalio) for the treatment of adult patients with symptomatic tenosynovial giant cell tumor (TGCT) associated with severe morbidity or functional limitations and not responsive to improvement with surgery.
Read more here.
Basis for the approval was the ENLIVEN study, a phase III study of which the results were recently published – find out more here.

First ever radioenhancer received European Market Approval

Nanobiotix has received European marketing approval for NBTXR3, a first-in-class nanoparticle device that boosts the effectiveness of standard radiotherapy in killing cancer cells. The product, now called Hensify, is a nanoparticle formulation of hafnium oxide, a material that absorbs X-rays, increasing the effective dose of radiation in a tumor. It is administered as a one-time injection into a tumor, given the day before conventional radiotherapy treatment. Read Nanobiotix’ official press release here.

Termination of Phase 3 TAPPAS Trial for advanced or metastatic angiosarcoma

TRACON announced in April 2019 that its Phase 3 TAPPAS trial evaluating TRC105 in combination with Votrient (pazopanib) in patients with advanced or metastatic angiosarcoma was terminated for futility based on the recommendation of the Independent Data Monitoring Committee (IDMC) following its review of interim unblinded safety and efficacy data from more than 120 patients enrolled in the trial at the time of the analysis. Read TRACON’s official press release here.

SpringWorks Therapeutics Phase 3 Trial Enrolling

SpringWorks Therapeutics is enrolling patients into the Phase III DeFi study in various countries in North America and Europe. DeFi is a study evaluating nirogacestat, a gamma-secretase inhibitor, in adults (18 years and older) with progressing desmoid tumors. Find out more about the study.
News from SPAEN Members

SPAEN Board Member Gerard van Oortmerssen chairs session at ESSO


SPAEN Board Member Gerard van Oortmerssen chairs session at ESSO
The annual meeting of the European Society of Surgical Oncology was held this year in Rotterdam from 8 until 10 October.

SPAEN Board Member and chair of the Dutch Patient Platform for Sarcoma Patients Gerard van Oortmerssen was appointed as a member of the Patient Advisory Group in 2018 and got the opportunity to organize an entire session during ESSO 39. Read more here.

PAWS GIST receives NCRI Excellence Award for Collaboration

Celebrating the NCRI Excellence Award for Collaboration to PAWS GIST on November 4th 2019. The Awards were created to celebrate the 15th year anniversary of the NCRI Cancer Conference and are directly linked to the key strategic objectives of the partnership, which aims to accelerate progress in cancer research through collaboration. NCRI (the UK’s National Cancer Research Institute) brings together major funders of research to take a strategic view of cancer and its research needs. Read more.

LtoR: Dr Iain Frame, Director of NCRI; Jayne Bressington, PAWS GIST; Dr Ramesh Bulusu, Oncologist for PAWS GIST; Baroness Delyth Morgan, Chair of NCRI

Webcast by the The Life Raft Group: "Dental Healthcare in GIST"

Dr. Nikhil Guhagarkar, SPAEN board member, is discussing the dental and oral complications of drugs used in GIST treatment and treatment of these side effects. He also speaks about methods of maintaining good oral hygiene.
Dr. Nikhil Guhagarkar is an Oral And Maxillofacial Surgeon and Dentist and has over 21 years of experience in his field. Dr. Guhagarkar practices at the Guhagarkar Dental Care Centre in Vileparle, Mumbai, India.

New educational resources developed to help make sense of treatment options for chordoma

The Chordoma Foundation released the first two pamphlets in the new Treatment Information Series, designed to provide in-depth information about each aspect of treatment that may be involved in your chordoma journey: “Systemic Therapy” explains the role and function of different treatments in treating chordoma, including when to consider them and what side effects to expect. “Clinical Trials” breaks down everything you need to know about clinical trials and how they work. Find the new information material here.

Results from Life Raft Group Registry

The Life Raft Group (LRG) patient registry contains records from 1716 GIST patients. Patient-reported treatment and outcome data were examined to determine treatment patterns and their impact on OS and recently published: “Survival in advanced GIST has improved over time and correlates with increased access to post-imatinib tyrosine kinase inhibitors: results from Life Raft Group Registry”
News from the Sarcoma Community

SELNET: Create a European and Latin American network to improve diagnosis and care

Appropriate management of sarcoma patients is hindered by the absence of referral policies to reference centers, incorrect or delayed diagnosis, non-adherence of therapies to clinical practice guidelines, and lack of expertise by practitioners, which increases the risk of relapse and death. These problems worsen in the Community of Latin American and Caribbean States (CELAC) due to the scarcity or complete unavailability of reference centers, expert pathologists, multidisciplinary tumor boards, new cancer drugs, clinical trials, patient registry data, and financial resources. Hence, the SELNET project seeks to create a European and Latin American multidisciplinary network of clinical and translational specialists to improve diagnosis and clinical care in sarcomas, with the aim of validating a collaborative model replicable in other rare tumors and in other countries.
SPAEN is a partner in this important EU-funded and makes the patients’ voice heard.
More about the SELNET project:
Patient Voice

WECAN Academy 2020


The EURORDIS Digital School on Social & Digital Media

Cancer patient advocates from 26 European countries, active across a wide spectrum of cancer types, spent four days last July at the first training course to be developed and run by advocates themselves. The intensive training ‘Academy’ was organised by WECAN, an informal network of leaders of cancer patient umbrella organisations active in Europe. Read more about WECAN and the WECAN Academy here.
And save the date for the next WECAN Academy in 2020:
July 26-29 June, 2020, Frankfurt, Germany.

The EURORDIS Digital School aims at empowering patient advocates, working with rare diseases and rare cancers, to use digital communication tools to improve the strategic outreach and community-building capacities of their organisations. A series of online training modules will also be available from 2020. Find out more
Upcoming Events and Courses



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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