Reflections for the New Year
Celebrating the successes of the sarcoma patient community in 2023 and looking at the road ahead
by Cory Archibald, Communications Director.
The last year was a tremendous period of growth for SPAGN. Today we’re sharing some of our highlights from 2023 and offering a peek at what we’re looking forward to in 2024 – as we celebrate 15 years!
Growing Our Team
In 2022, Sarcoma Patients Euronet (SPAEN) officially changed our name to Sarcoma Patient Advocacy Global Network (SPAGN) in recognition of our growing global reach.
As we extend our outreach into new countries and regions of the world, we are advancing our goal of connecting patients of these rare diseases, as well as their loved ones, with other people who are going through the same experience all around the world.
In 2023 alone, SPAGN expanded our membership further into Asia and Latin America. For the first time, we welcomed new members from Japan, Brazil, and Ireland, and added additional patient advocate members from Hungary, India, Italy, the UK and the USA.
Today, our membership stands at 67 strong, with a presence on every continent and ongoing outreach efforts throughout Latin America.
As our membership base grows, so does our need to support them. We also doubled our team in 2023!
Alongside Kathrin Schuster (our Executive Director) and Michi Geiẞler (Director of Projects), Cory Archibald joined the SPAGN team in March as the new Director of Communications, and Ivana Angelovska joined in October as our new Project Manager.
In addition to our staff and dedicated board, we have several special volunteers who have contributed tremendously to our work, and without their efforts much of what we achieved last year would not have been possible.
Amy Bruno-Lindner (Austria), who also served on the SPAGN Board from 2021 to 2023, took charge of the Voices of Sarcoma blog as Editor-in-Chief. Amy stepped down from both roles at the end of 2023, and handed the reins of the blog to Gabi Ott (Austria/Germany).
Gabi has contributed substantially to our blog throughout the year and also played vital support roles at the SPAGN annual conference and other events.
Roger Wilson (UK) serves on the SPAGN Board as honorary president. He is also a member of the blog team and a regular contributor.
Finally, Natalia Fernandez (Spain) has been leading our outreach efforts to Latin America, which will continue into 2024.
We look forward to expanding our scope and hope to welcome new volunteers in 2024!
Strengthening Our Ties
The 13th SPAGN Annual Conference convened in Dublin in May 2023, and for the first time ever was held jointly with the New Horizons GIST Conference. Nearly 80 participants came from all over the world. Many stayed for both conferences, and some joined remotely!
PHOTO CREDIT: Uli Deck
In addition to our own conference, SPAGN participated in four sarcoma congresses throughout 2023. At the ESMO Sarcoma & Rare Cancers congress, we facilitated one session and set up a booth to share our work with other participants.
We joined the 42nd Congress of the European Society of Surgical Oncology (ESSO) and delivered a talk, and also attended the annual conference of the American Society of Clinical Oncology (ASCO).
We finished the year back in Dublin at CTOS, where Roger Wilson presented SPAGN’s work on defining standards for sarcoma specialist centers and establishing a new Sarcoma Intelligent Specialist Network. Watch Roger’s presentation on our YouTube channel here.
At CTOS, we also facilitated the Patient Advocacy Lounge for the second year running, and last year’s lounge was a tremendous success. More than 40 posters were displayed highlighting SPAGN’s work and the work of our member groups, and the lounge proved to be a popular and effective meeting space for our advocates and partners.
One of those meetings was the inaugural gathering of the Bone Sarcoma Alliance.
Expanding Our Knowledge
SPAGN participated in four research projects throughout 2023: SELNET, the Euro Ewing Consortium, FOSTER, and Strexit 2.
We also conducted two surveys to determine patient priorities in sarcoma research: the Patient Powered Research Network Survey and the Bone Sarcoma Survey.
Looking Ahead in 2024
As we celebrate 15 years of SPAGN, there is much to look forward to this year!
We plan to expand awareness campaigns for early diagnosis with a comprehensive content plan for Sarcoma Awareness Month.
We held our first meeting with a small group of sarcoma patients from Latin America just a few weeks ago and will continue our outreach and networking in that region to build trust and establish stronger ties.
We intend to continue our work with the Bone Sarcoma Alliance, and have already completed the third meeting as a group.
We will be celebrating our 15th anniversary at the SPAGN Annual Conference in Rome this April. Registration is already open, so be sure to reserve your spot now!
Don’t forget to submit your projects for our Advocacy in Action Award. Winners will be presented at the conference in Rome.
We will also bring the Patient Advocacy Lounge back to CTOS once again! And SPAGN will attend EMSOS for the first time this year.
To help us keep track of all this, we have already launched an all new events calendar on our website, so check back often for updates to see what’s coming up!
Finally, you can keep up with everything we have going on by following our blog, signing up for our newsletter, following us on social media, and checking the website regularly for updates.
And if you’re interested in becoming a member, we would love to hear from you! Learn more here.
We would like to thank all of our member groups, our board, our thriving community of experts and advocates, and of course our pharma partners for a tremendous year in 2023. We look forward to our continued collaboration in 2024 and beyond!