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Together We Can Make A Difference
For Those Affected By Sarcomas!


2021 SPAEN Virtual Conference: 22 - 24 April 2021

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SPAEN 2020 Conference Header 2021 V2 final

11th SPAEN Annual Conference
Virtual, global, informative and collaborative

The ongoing pandemic and the decision to hold the SPAEN 2021 Annual Conference as a virtual meeting has allowed us to have even more participants in 2021! Over 200 registered participants attended the SPAEN Conference 2021 with internationally leading sarcoma experts and patient advocates representing organizations covering all subtypes of sarcomas or subtype-specific groups for e.g. desmoids, chordomas, leiomyosarcomas or bone cancer.

The three half days were full of learning about medical topics ranging from the status of research in sarcomas, case studies, updates on new approaches in sarcomas. But also capacity building about patient involvmenent in clinical research and evidence was  part of the meeting.


See the agenda pdf here (553 KB)

Presentations and Recordings

Day 1 - 22.04.2021
Opening of the SPAEN Conference 2021 Recording
Session 1: Spotlight on...  

Biopsy: How is it done? Quality/mistakes, prognosis/center  
Piotr Rutkowski, POL

pdf PDF download (6.91 MB)
Diagnosis: Insights from Sarcoma UK / BCRT survey
Dr. Sorrel Bickley/Tobi Firth, UK
pdf PDF download (2.59 MB)
Session 2: Development and diagnosis of metastasis, disease-specific patterns
and local treatment options

Radiologist/surgery (diagnosis)
Nicos Fotiadis, UK
pdf PDF download (10.63 MB)
Robin Jones, UK
pdf PDF download (2.19 MB)
Session 3: Immunotherapy incl. gene cell therapy  
An overview
Joanna Szkandera, AT 
pdf PDF download (6.08 MB)
Day 2 - 23.04.2021
GIST Track Soft Tissue Sarcoma Track Bone Sarcoma Track Desmoid Track
New compounds in GIST:
Avapritinib & Ripretinib

Jon Trent, US
pdf PDF download (2.09 MB)

Elderly outcomes in clinical trials and priorities of patients starting palliative chemotherapy
Eugenie Younger, UK
pdf PDF download (1004 KB)

Clinical trials in elderly metastatic sarcoma patients; challenges and future directions
Winette van der Graaf, NL
pdf PDF download (1.25 MB)

The role of EMSOS in Europe
Andreas Leithner, AT

Improving the understanding of primary bone cancer
Judith Bovee, NL
pdf PDF download  (6.73 MB)

Challenges in exploiting medical therapies for desmoid tumors
Bernd Kasper, DE

pdf PDF download (3.57 MB)

Updates Italian studies pregnancy and desmoids
Desmoid Foundation IT


Three GIST Case Studies
Mikael Eriksson, SWE
Recording can be made available on request

Uterine LMS – Profile, diagnosis and challenges
Roberta Sanfilippo, IT
pdf PDF download (24.53 MB)

Oncology (treatments) and biomarker landscape
Sue Burchill, UK
pdf PDF download (1.39 MB)

Quality of life project
Anne-Rose Schut, NL
pdf PDF download (1.12 MB)

Results from Cryodesmo Study
Jean-Emanuel Kurtz, FR
pdf PDF download (4.84 MB)

Long-term survivorship on TKIs
Clinical aspects

Hans Gelderblom, NL
pdf PDF download (1.44 MB)

Patient discussions on forumsas data source for adverse drug reaction  
Anne Dirkson, NL
pdf PDF download (715 KB)

Research Update
Robin Jones, UK
  pdf PDF download (5.43 MB)

Clinical trials in bone sarcomas
Sandra Strauss, UK
pdf PDF download (3.12 MB)

Patient story on resilience
Kate Surman, UK

 Day 3 - 24.04.2021
Session 1: Patient Involvement in clinical research Recording

Markus Wartenberg, DE

pdf PDF download (817 KB)

Overview & Case Study
Roger Wilson, UK


PPRN Survey: Overview & Results
Gerard v. Oortmerssen, NL

pdf PDF download (827 KB)

Session 2: Evidence  

Evidence from a scientific point of view
(Scientific evidence – evidence level – Challenges in rare diseases – criteria of regulators)
Jaap Verweij, NL

pdf PDF download (2.37 MB)

Evidence-based advocacy
Zack Pemberton-Whiteley, UK

pdf PDF download (2.29 MB)

SPAEN Advocacy in Action Award 2020 winners have been announced!

In 2017, we announced the “SPAEN Advocacy in Action Award” for the first time and were amazed to receive such high-quality, outstanding and interesting submissions during the last years. Reason enough for us to continue to make some noise about the projects and initiatives that are being implemented each day, each month or each year in various countries.

However, we acknowledge that we all face a different situation due to the coronavirus pandemic. This confronts all of us with new challenges, but also creates room for new and innovative ideas and solutions.

Giving credit to this new situation, we decided to award two prices for the “SPAEN Advocacy in Action Award 2020”:
•    One prize for one for traditional patient advocacy projects and
•    one for innovative COVID-19 related projects

The winner in the category "COVID-19 related projects" is:

SPANDAN/VCare - see project summary pdf here (667 KB) .

VCare SPANDAN 1st proze COVID related projects final

The two winners in the caterory "Traditional patient advocacy projects" are:
Bone Cancer Research Trust (see project summary   pdf here (500 KB) ) and Polish Sarcoma and Melanoma Group see project summary   pdf here (581 KB) .

 SPAEN 2021 Advocay Award 2020 RZ Bone Cancer Research Trust  SPAEN 2021 Advocay Award 2020 RZ Polish Sarcoma and Melanoma Group

See here all the submitted projects.

Further information

10th SPAEN Annual Conference Video


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