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Dear SPAGN Members and Friends,

what's new in desmoid tumors and chondrosarcomas? Find out below.

And: Join us for the SPAGN Conference 2023 and apply for the SPAGN Advocacy in Action Award!

All the best from the
SPAGN Board of Directors & Team
Desmoid trial published in NEJM

The DeFi trial on nirogacestat in desmoid tumors has been published in the New England Journal of Medicine, one of the world's leading medical journal and website.
Read the publication here.

Desmoid-type fibromatosis (DF) is a very rare disease. It arises in the deep soft tissues and does not spread among the body. However, it is locally aggressive and its clinical course is often unpredictable. Currently, treatment options are limited and there are no approved medications. 

Nirogacestat is the first medication on the way to approval. In the DeFi trial, nirogacestat was associated with significant benefits for adults with progressing desmoid tumors - this might be groundbreaking for future treatment and management of desmoid tumors.

Special thanks to the whole team that made this possible: Bernd Kasper and Mrinal Gounder and the team of authors of the publication.
Chondrosarcoma: New registry

New Patient Registry Creates a Platform to Share Patient Journeys with Chondrosarcoma

Three years ago, Jeffrey Kramer made a promise to his daughter as she bravely battled the rare bone cancer Chondrosarcoma. Today, he is taking an important step in honoring that promise with the launch of the Chondrosarcoma Patient Registry — a new registry on NORD’s IAMRARE® platform that will make it possible for patients around the world to share information about a disease that currently has no cure.

SPAGN Annual Conference & New Horizons GIST 2023: Register now!

SPAGN Annual Conference

May 11-13, 2023 in Dublin/Ireland




The SPAGN Annual Conference will take place again! During this year’s conference, many exciting topics are waiting for you, from medical and research updates to innovations in the medical world, new approaches in the management of sarcomas, but also active exchange in our market place sessions and discussion panels.

You can be involved, too: In a newly established session "Sharing Best Practice" you can submit your projects - 5 of which will be present and discussed during the conference. Please submit your projects here.

Above all, we look forward to seeing you all again and bringing the sarcoma community back together.

Register today and join us in Dublin, Ireland!
You can register here.
Find more information about the SPAGN Annual Conference 2023.

Any questions? Please contact us at email info@sarcoma-patients.org

SPAGN Advocacy in Action Award 2022/23

Apply now!

Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We want to celebrate and honor outstanding practices, projects, initiatives or campaigns and the creators working behind these activities.

You are invited to participate in the
"SPAGN Advocacy in Action Award 2022/23”!

The winning projects/teams will receive
1st                              2.000 €
2nd                            1.500 €
3rd                             1.000 €

The submission deadline has been extended till March 31, 2023.
See our website for the submission form/call to action!
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Sarcoma Patient Advocacy Global Network e.V./Assoc., 
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61200 Wölfersheim/Germany
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