by Amy Bruno-Lindner, SPAGN Volunteer and Editor-in-Chief of Voices of Sarcoma.
The Connective Tissue Oncology Society held its annual conference in Dublin, Ireland from November 1-4, 2023. The conference, an opportunity for the global sarcoma community to come together, has left a lasting impression: The role of patient advocates in this community is growing.
According to Roger Wilson, Honorary President of SPAGN, “One of the strengths of the CTOS conference has always been that science and medicine mix. This year we added another 'flavour' with the strong presence of patient groups.“
SPAGN’s Patient Advocacy Lounge was dedicated to the work of advocates – and it was a huge success. As expected, the Lounge turned out to be a great meeting place for patient advocates, but also for all other attendees of CTOS: sarcoma experts, researchers, industry partners, among others. It was also a venue for posters displaying the work done by SPAGN member groups from all over the world. What’s more, a patient advocacy reception was held in the Lounge on Thursday evening which was attended by approx. 50-60 attendees, most of them patient advocates, but also experts and industry partners.
A Special Place to Meet and Talk
“It was a room where there were no barriers, no artificial `them and us’, and where little was needed in the way of introductions.“ (patient advocate from the UK)
The Lounge was a special place -- a newcomer entering the room found a relaxed atmosphere, a cup of coffee, lots to read in the posters on display, and a welcome ear to hear about their background and professional contact with patients and patient groups.
The Lounge was buzzing with talk during most of the conference. There might be a meeting underway -- a group three of four or maybe more clearly having a focused discussion. There would also be familiar faces with prominent speakers and clinical/research leaders having a relaxed conversation.
Scheduled meetings were also held in the Lounge. These included SPAGN’s own meetings, such as that of the Bone Sarcoma Alliance, the meeting of the Boards and Teams of CTOS and SPAGN, as well as the meeting of the SPAGN Board & Team with industry representatives.
Be Sure to Check Out the Posters – “Pure Inspiration!”
"It was great to `get out of our bubble´ and to get to know other practices, ideas and issues. The lounge and the posters were pure inspiration!" (patient advocate from Brazil)
The walls of the Lounge were covered with posters created by SPAGN member organizations, who used the opportunity to showcase the work they are doing for sarcoma patients in their own country and (increasingly) on a global scale.
Have a look at the 27 posters now on display on SPAGN’s website – you will definitely get inspired when you read about the truly dazzling array of projects, public awareness campaigns, patient-led research initiatives, disease-specific roundtables, partnerships and studies undertaken by advocacy groups. Find out about the “Warrior Mails” sent to kids with osteosarcoma, outings for families dealing with childhood cancer in Hungary, a telemedicine platform in India, a national tissue bank in the UK, psychological support for people affected by sarcoma in Bulgaria, and the “Could It Be Sarcoma?” golf-ball campaign in Sweden, among many, many other inspiring initiatives.
Highlights and Notable Achievements
- One of the highlights of the conference was Roger Wilson’s presentation during Session 1 on "What is a sarcoma specialist center?". This presentation was followed by many requests onsite and by email and fostered a lot of valuable discussions.
- A further highlight was the work of the outreach committee, led by Dr. Bernd Kaspar. Twelve healthcare professionals from underrepresented countries -- including Brazil, Chile, Nigeria and Russia -- received scholarships and were able to attend CTOS.
- Finally, thanks to our participation in the SELNET project, SPAGN was able to support a patient representative from South America, making it possible for them to attend the CTOS conference.
Some Feedback from Attendees
"It was so great to catch up with you in Dublin and to see the success of the Patient Advocacy Lounge. You all created such an open and welcoming space for important connections to be made and to catch up with familiar faces too – thank you so much for inviting us to be a part of it." (patient advocate from the UK)
"I am so glad everything worked out well for SPAGN in the hospitality lounge, We had many wonderful comments about it!" (member of CTOS)
"I have to tell you - that lounge is such a fantastic idea. I'm sure everyone is raving about it to your team. Having a place to convene made things so easy to connect. Thank you and your team for making that happen." (patient advocate from the US)