June 24-26, Frankfurt/Germany
The SPAEN Annual Conference 2022 was held as a hybrid event from 24-26 June 2022 in Frankfurt, Germany. For the first time since the start of the pandemic in March 2020, the event took place as a face-2-face meeting, allowing a limited number of participants to meet in person, to exchange experiences, chat and be part of the community again. Those who could not or would not travel were able to actively participate at the meeting and all the session online.
The two-day conference was again full of learning about medical topics, research and important advcoacy topics such as Drug Repurposing, Sarcoma Centers of Excellence or Quality of Life in Sarcomas. Recordings of the sessions will be accessible here soon.
Find the full agenda pdf here (620 KB) as pdf for download.
The contributions of the conference - see the recordings
Day 1 (24.06.2022)
- Welcome to Frankfurt by Markus Wartenberg (GER), Denise Reinke (USA) and Vandana Gupta (IND)
- Patient Involvement in Rare Cancer/Sarcoma Research by representatives from different national patient advocacy groups around the world.
Day 2 (25.06.2022)
- Drug Repurposing by Ornella Gonzato (ITA), Denise Reinke (USA), Dr. Marco Schito, CURE Drug Repurposing Collaboratory (USA) and Dr. Pan Pantziarka, Anticancer Fund (UK).
- Quality of Life, PRO's and long-term survivorship by Lee Aiyegbusi (UK), Dagmara Kulis (BEL), Olga Husson (NLD) and Richard Stephens (UK), moderated by Roger Wilson (UK).
- Quality in Sarcoma Surgery - Image, Board, Biopsy by Jens Jakob (GER).
- Announcement of Advocacy in Action Award Winners 2021, moderated by Denise Reinke (USA).
- Soft Tissue Sarcoma - Medical & Research Update by Robin Jones (UK).
- Soft Tissue Sarcoma - Educational Spotlight: Liposarcomas by Peter Reichardt (GER).
- Soft Tissue Sarcoma - Treatment decisions in elderly metastatic patients by Winette van der Graaf (NLD).
- GIST - Medical and Research Update by Jean-Yves Blay (FRA).
- GIST - Avapritinib & Ripretinib in the treatment algorithm by Jon Trent (USA).
- GIST - Role of surgery in all stages of disease by Winan van Houdt (NLD).
- Bone Sarcomas - Top 10 Research Projects in Bone Sarcomas by Andreas Leithner (AUT).
- Bone Sarcomas - ctDNA in Bone Sarcomas by Eleni Tomazou (AUT).
- Bone Sarcomas - Living with and beyond bone sarcoma by Uta Dirksen (GER).
Day 3 (26.06.2022)
Sarcoma Centers/Networks of Excellence - a discussion, moderated by Denise Reinke (USA).
Advocacy in Action: 2 groups awarded in 2021/22
During the conference, the award ceremony for the “SPAEN Advocacy in Action Award 2021” were held: 11 projects were entered and again showed impressively how advocacy can change and improve the situation for patients. Denise Reinke, newly elected board member led the award ceremony and emphasized that all entries were fantastic! An independent jury finally decided on the winners:
- Sarcoma UK in the category of “traditional projects” for their project “Launch of Sarcoma UK’s Research Patient Involvement Programme”
- The Sachin Sarcoma Society, India, in the category of “Innovative COVID-related projects” for their project “Spreading Awareness and Building Companionship among Desmoid Tumor Patients”
SPAEN congratulates the winners, but also all groups that handed in a submission for their outstanding work.
Annual General Meeting: Change of statutes & election of board members
Additionally, the Annual General Meeting was held: It was decided by the membership that SPAEN will be called Sarcoma Patients Advocacy Global Network (SPAGN) to give more credit to the organisation’s global work. More information can be found here: SPAEN becomes SPAGN.
We also congratulate the former and now again newly elected board members Markus Wartenberg from “Deutsche Sarkom-Stiftung” (German Sarcoma Foundation), who was also confirmed as co-chair, Christina Baumgarten from “SOS Desmoid”, Germany, Kai Pilgermann from “Deutsche Sarkom-Stiftung” (German Sarcoma Foundation), Germany and newly elected board member Denise Reinke, USA.
We thank Annika Laakso, Finland for her service to the board over the last 4 years.
SPAEN/SPAGN 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.