SPAGN Annual Conference 2023


The SPAGN Annual Conference will take place again: After 2 years of living through the pandemic we start again into meeting face to face. 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 presented and discussed during the conference. Submit your projects here.

For the first time ever, the SPAGN Annual Conference will be linked to the New Horizons GIST conference, a global GIST patient advocate conference. Find more information here.

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


The location: Crowne Plaza Dublin - Blanchardstown, Blanchardstown Town Centre, Dublin 15, Ireland

Please register here.

Please find below the preliminary program or as download here.

DAY 1 – THURSDAY May 11, 2023
12:30                   OFFICIAL START OF THE CONFERENCE
12:30 (15)


Welcome to Dublin/Ireland on behalf of the SPAGN Board of Directors
Sorrel Bickley, UK
12:45 (45) Patient Host/Chair: Gerard van Oortmerssen, Netherlands

What are the main tasks of pathologists in sarcoma today?

Speaker: Bernadette Liegl Atzwanger, Austria

13:30 (60) Patient Host/Chair: Markus Wartenberg, Germany

We need more and better research in sarcomas. Get to know two examples of systematic programs: For basic research
and research results coming directly from and for treatment reality

Speaker: Stefan Fröhling, Germany

14:30 – 15:00      C O F F E E   B R E A K
15:00 (75)


Patient Host/Chair: Estelle Lecointe-Artzner, France

HTA Health Technology Assessment: The systematic, evidence-based
assessment of treatments, medical procedures and technologies with
regard to their effects (incl. e.g. costs) on healthcare

Understanding the rationale and underlying factors behind HTA

Short “snapshots” from different countries: UK, France, Germany, Canada, Poland


16:15 (75)

Call for

Session Chairs: Vandana Gupta, India

Sharing Best Practice in Patient Support or Patient Advocacy. Call for Abstracts: Completed, ongoing or planned projects

17:30 – 17:45      S H O R T   B R E A K

17:45 (60)


All conference participants are welcome! (Voting rights for SPAGN members only)

This session has an official invitation / agenda – important topics are:
- Report of the Board of Directors / Executive Director (2022)
- Financial report (2022)
- Outlook 2023 and beyond
- Applications/requests

SPAGN Board of Directors, Kathrin Schuster (Executive Director)

19:30 Networking Opportunity: Informal “Get Together”
Including Award ceremony "Advocacy in Action Award 2022/23"


DAY 2 – FRIDAY May 12, 2023
07:30 (45) Early Breakfast Session: Patient Involvement in Cancer Research

Example from Germany: “NCT National Center of Tumour
Diseases”: “Patients as Research Partners”

Speaker: Markus Wartenberg, Germany

08:30 Welcome to Day 2

08:30 (60)

Patient-Host-/Chair – Moderator: Roger Wilson, UK

Keynote: The value of patient’s input  in sarcoma research
Winette van der Graaf, Netherlands

The patient / patient advocate perspective
Roger Wilson, UK


09:30 – 10:00      C O F F E E   B R E A K

10:00 (90)


Patient-Host-/Chair: TBD

Bone Sarcomas: Focus on developments and special topics

  • Important research updates in osteosarcomas and Ewing sarcomas
    Speaker TBD
  • FOSTER (Fight Osteosarcoma Through European Research)
    Project and early results of an osteosarcoma survey
    Speaker TBD
  • AYAs (Adolescents and Young Adults) with sarcomas: An underserved community: Challenges and solutions
    Winette van der Graaf, Netherlands
11:30 – 13:00      L U N C H and NETWORKING
13:00 (60) Patient Host/Chair: Markus Wartenberg, Germany

Adherence (Compliance) with oral therapies is a complex behaviour. Understanding the challenges and causes of non-adherence

Rob Horne, Professor of Behavioral Medicine, UK

14:00 (60) Patient Host/Chair: TBD

Diagnosis and therapy of cancer diseases by nuclear medicine and the role of nuclear medicine in sarcomas

Wolfgang Fendler, Clinic for Nuclear Medicine, Germany

15:00 – 15:30      C O F F E E   B R E A K


The SPAGN “Market Place Sessions”
Choose your 3 favourite sessions from 5 market booths
Booth 1: Making materials for patients more patient-friendly and clear
Booth 2: The 101 of political lobbying: The UK-experience
Booth 3: Basics of data protection and data security in patient organizations
Booth 4: How is a scientific publication (abstract) structured and how is it created
Booth 5: What to consider when working with pharmaceutical companies
17:00                   B R E A K   B E F O R E   D I N N E R
19:30 External Dinner


DAY 3 – SATURDAY May 13, 2023
From 07:00 Breakfast: Meet Your Peers (…on a voluntary basis…)

Breakfast tables according to indication groups:
Soft Tissue Sarcomas, Bone Cancer, GIST, Desmoids etc.

08:30 Welcome to Day 3
8:30 (120)


Patient Host/Chair: Denise Reinke, USA & Sorrel Bickley, UK

The research forum for soft tissue sarcoma subtypes:

Speakers: Jon Trent, Peter Reichardt, Robin Jones, Bernd Kasper

  • Leiomyosarcomas
  • Liposarcomas
  • Desmoids
  • Other selected subtypes (e.g., synovial, EHE, pecoma)
10:30 – 11:00      C O F F E E   B R E A K
11:00 (45)


Patient Host/Chair: Kathrin Schuster, SPAGN

Tenosynovial giant cell tumor (TGCT)

  • Brief introduction to the disease TGCT/PVNS
    Speaker TBD
  • The TGCT Consensus Paper: A joint patient-expert initiative
    Speaker: Silvia Stacchiotti, Italy
11:45 (60)


Moderator: Roger Wilson, UK & Denise Reinke, USA

Working Session “Global Sarcoma Care Charter 2023”:
Minimum global standards for diagnosis, treatment and care in Sarcomas.
Underscoring the global need for equitable care and access to expertise and therapies
A discussion session

12:45 Closing Remarks – Farewell – End of Meeting
SPAGN Board of Directors
13:00 – 14:00      L U N C H and NETWORKING
14:00 Start of “New Horizons GIST-Meeting”
(Separate agenda)