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Dear SPAGN Members and Friends,

autumn will be busy - be prepared and read below what's going on and how you can be involved!

All the best from the
SPAGN Board of Directors & Team
Knowledge Spots: Next webinars in October and November

Listen, learn, ask, discuss!

The SPAGN Knowledge Spot webinars are a source of highly accessible information for well-informed, knowledgeable non-specialists - such as SPAGN's national patient advocacy groups.

You are invited to join us to listen, learn, ask and discuss with us on the following topics:

Understanding Health Technology Assessment
Speaker: Karen Facey, HTAi, UK
October 4, 2023, 5pm CET / 11am ET
Register here.

Open clinical studies in soft tissue sarcomas, GIST and bone sarcomas
Speakers: Nathalie Gaspar, France & Robin Jones, UK
November 21, 2023, 5pm CET / 11am ET
Register here.

Photo: Andrew Neel - Unsplash
More information & registration here!
Incorporating the patient voice in sarcoma research: Quality of Life in Sarcomas

How can we assess quality of life of sarcoma patients?

Soft tissue and bone sarcoma patients form a diverse and rare patient group. Quality of life questionnaires used in research and clinical practice are not always complete and relevant for the unique experiences of this patient group.

Take part in a quality of life study for sarcomas – make your voice heard!

This international sarcoma survey study is funded by the Quality of Life Group (QLG) of European Organization of Cancer and Treatment (EORTC) in collaboration with the EORTC Soft Tissue and Bone Sarcoma Group (STBSG). We want to investigate the best measurement strategy for quality of life in sarcoma patients.

Interested? Read more here.
Clinical trials & study registry

Clinical trials: Important part of disease management

Clinical studies are an essential step in the development of novel treatment methods for cancer and other diseases. Especially for rare cancers such as sarcomas, clinical studies are an important component of treatment concepts because here the standard forms of therapy are often limited. 

In our study registry, we list currently ongoing studies in sarcomas or different subtypes of sarcomas that are conducted internationally.
Check out our study registry here.

Excerpt of our study registry:

  • ChonDRAgon assesses INBRX-109 in unresectable or metastatic conventional chondrosarcomas
  • PEAK compares CGT9486+Sunitinib vs. Sunitinib in advanced GIST in second line treatment
  • IDRX-42 in advanced GIST after at least 1 prior therapy
  • Ringside assesses the efficacy and safety of AL 102 in desmoid tumors
  • Motion evaluates the effectiveness of vimseltinib in tenosynovial giant cell tumor (TGCT)
  • SunriseLMS compares unesbulin plus dacarbazine versus placebo plus dacarbazine in advanced leiomyosarcoma after 1 prior line of systemic therapy
  • STRASS2: Surgery With Our Without Neoadjuvant Chemotherapy in High Risk Retroperitoneal Sarcoma
If there are further trials to be listed in our registry, please reach out to us on info@sarcoma-patients.org
Photo: Louis Reed on Unsplash
CTOS 2023

It is our great pleasure to announce that patient advocacy will once again have a well-earned place at the Connective Tissue Oncology Society (CTOS) Annual Meeting.

We will be hosting the Patient Advocacy Lounge at CTOS 2023 in Dublin:

Patient Advocacy Lounge
Liffey Hall 2, Convention Centre Dublin

We would like to invite you -- our dedicated and involved sarcoma patient advocacy groups -- to be an active part of the Patient Advocacy Lounge.

Find out how you can be involved here!
Upcoming Events and Webinars
Twitter Nutzername Facebook Firmenname Instagram Nutzername LinkedIn Firmenname
Sarcoma Patient Advocacy Global Network e.V./Assoc., 
Untergasse 36,
61200 Wölfersheim/Germany
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