10^th SPAEN Annual Conference in Milan, Italy:
Global, diverse, informative and collaborative

From January 31-February 2, the 10^th SPAEN Annual Conference was held in Milan, Italy, once again in conjunction with the expert conference “ESMO Sarcoma & GIST Symposium 2020”.

With more than 70 patient advocates from 22 countries on 4 continents, more than 25 speakers, internationally leading sarcoma experts and representatives of the healthcare industry, it was the largest conference ever: Experienced and long-term patient advocates mixed up with new representatives and even new member groups, representing organizations covering all subtypes of sarcomas or subtype-specific groups for e.g. desmoids, chordomas, leiomyosarcomas or bone cancer.

 

Latest medical news and capacity building

The two conference days were full of learning about medical topics ranging from the status of research in sarcomas, pathology in GIST, side-effect management and radiotherapy in desmoids, update on new approaches in sarcomas, GIST case studies and detailed information on chondrosarcomas and desmoplastic round cell tumors, Quality of Life in sarcomas and more. But also capacity building about standards of excellence for patient organizations, patient advocate-patient communication, organizing patient meetings, reading and interpreting scientific data or the use of social media were an important part of the meeting. With an interesting mixture of different session formats ranging from powerpoint presentations, to market place sessions to panel discussions, it held a wealth of information and inspiration.

Also always worth to be part of such a community is the talk before and after sessions about similar or completely different problems, projects, good or bad experiences and brainstorming new ideas – a great way to learn from each other.

 

Advocacy in Action: 4 groups awarded in 2019/2020

During the conference, the award ceremony for the “SPAEN Advocacy in Action Award 2019” were held: 12 projects were entered and again showed impressively how advocacy can change and improve the situation for patients. Roger Wilson, honorary president led the award ceremony and emphasized that all entries were fantastic! An independent jury finally decided on the winners, with a tie for second place:

• Desmoid Foundation Italy - “A bridge for Desmoid Tumor: physicians and patients share knowledge, fears, emotions and troubles to understand better the different point of view of this pathology”
• India: Friends of Max - Chai for cancer AND UK: Sarcoma UK - The Accidental Activist
• UK: Bone Cancer Research Trust - Bone cancer conference

SPAEN congratulates the winners, but also all groups that handed in a submission for their outstanding work.

 

Annual General Meeting: Election of board members and the future of SPAEN

Additionally, the Annual General Meeting was held: We congratulate the former and now again newly elected board members Nikhil Guhagarkar from “The Friends of Max”, India as well Gerard van Oortmersson from “Patientenplatform Sarcomen”, The Netherlands to their re-election to the board.

 

It was also announced that the SPAEN Board of Directors will be holding a strategy meeting in late April to discuss and decide on the future focus and development of the organization. Thoughts and input from the community is welcome and can be sent to This e-mail address is being protected from spambots. You need JavaScript enabled to view it..

SPAEN is looking forward to another year with new and ongoing projects, more inspiring ideas and new approaches and fruitful input from both “old” and the new groups.

 

SPAEN Annual Conference and EMSO Sarcoma and GIST Symposium: a great combination

Participants of the SPAEN Conference were also welcome to attend the ESMO Sarcoma and GIST Symposium (3-5 February 2020) for free. Prior to the Sarcoma and GIST Symposium, ESMO run a half-day Preceptorship course (February 3) which is led by an expert faculty and designed to provide young oncologists with a brief outline of both STS & GIST (ESMO Basic Sarcoma course). More than 25 SPAEN delegates also attended the ESMO Symposium.

Programme

• pdf SPAEN 2020 Annual Conference Programme (665 KB)
• ESMO Sarcoma and GIST Symposium Programme (link to ESMO website)
• pdf ESMO Sarcoma and GIST Symposium Programme (as pdf) (252 KB)

Further information

• pdf SPAEN 2020 Annual Conference Booklet (2.21 MB)
• Link to photos of the SPAEN Conference 2020 (link is available until beginning of March)
  If you share single photos, please give credit to Uli Deck, ARTIS
• Presentations of the SPAEN Conference 2020
• The SPAEN Clinical Sarcoma Research Paper on "The challenge of sarcomas: the patient advocacy group perspective"

 

Any questions? Please contact us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

 Photos:Uli Deck / ARTIS