The sarcoma community is active - there's lots for you to check out, to join and make your voice heard as well. See below for our latest updates about the sarcoma world and SPAGN.
All the best from the SPAGN Board of Directors & Team
Your priorities in sarcoma research – make your voice heard!
The need for patient involvement in scientific research is curcial. It is our aim to open up the discussion between patients and clinicians to agree on priorities for future research.
Through our Patient-Powered Research Network (PPRN), we bring together clinicians, patients, and carers to identify and prioritize evidence uncertainties in sarcomas that could be answered by research. Part 1 of our project has been completed and is published here .
Cory joined SPAGN as new Communications Director in March 2023. She has worked in communications and training for nearly 20 years across multiple industries, in both corporate and non-profit roles. As an American expat who has lived and worked abroad for half her life, she has worked with teams on nearly every continent. She has a deep passion for advocacy and has worked with some of the leading progressive politicians in the United States to advance healthcare policy, including multiple members of Congress. Cory and her husband are also active animal rescuers and have coordinated with animal rescue groups all over the world.
“I am thrilled to join the team at SPAGN! Kathrin, Michi, and all our Board members have built a strong foundation with a global reach, and I’m excited to work with everyone to take SPAGN to the next level. Like many people, my family has been impacted by cancer, and I am grateful for the chance to honor the legacy of my loved ones by advocating for better patient care and patient-centered research.”
This second webinar hosted by CTOS is focussing on Alveolar Soft Part Sarcoma (ASPS). It is our great pleasure to announce that the event will be opened by a presentation from patients' perspective: Dr. Yosef Landesman, father of an ASPS survivor and founder of the patient organization iCureASPS will be speaking on behalf of SPAGN and the patient community.
The webinar will take place April 26, 9-11am Eastern Time.