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CTOS 2023 Highlights: Patient Advocacy Lounge Leaves a Lasting Impression
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 and SPAGN’s Patient Advocacy Lounge was a huge success.
Read MoreWhat is a sarcoma “specialist centre”?
Management of sarcomas in specialist centres is associated with significant benefits for patients. Amongst those who have experience with sarcoma, it is undisputed that sarcoma should be treated by experts or in specialist centres, although evidence is limited. No clear criteria Despite broad use, the terms ‘specialist centre’ or ‘expert centre’ are rarely defined. Without…
Read MorePatient Advocates Meet the World’s Sarcoma Specialists in November
The oncology community is preparing to gather for the annual conference of the Connective Tissue Oncology Society (CTOS) in Dublin from November 1-4. This pivotal event brings together oncologists, researchers, and patient advocates dedicated to the common goal of advancing the understanding and treatment of these rare cancers. We take a closer look at the importance of the CTOS-SPAGN partnership and its global impact going forward.
Read MoreItaly: MC4 in corsa per la vita!
Italy: MC4 in corsa per la vita! Back to members Organisation Profile Our Mission: Base our direct experience, conventional medicine still cannot offer specific and effective treatments for rare cancer like EpS; once thesurgery, chemo and radio therapies have failed, there is not much left. There are compassionate treatments, experimental treatments which, however, if…
Read MoreWECAN Academy 2023: Empowering Cancer Patient Advocates in Europe
WECAN – The Workgroup of European Cancer Patient Advocacy Networks was established in 2015 when 15 umbrella cancer patient advocacy organizations came together to initiate the informal network. WECAN was born out of the true need for the cancer patient community to share experiences and work together. SPAGN is one of the current over 20…
Read MoreUnderstanding Mental Health in Rare Soft-Tissue Tumor Patients: Take the Survey and Share Your Insights
Mental health in patients with rare soft-tissue tumors What is this online survey about? The purpose of this survey is to learn about the experiences and challenges of individuals with soft-tissue tumors. In doing so, we focus on a variety of mental health-related aspects which will help to gain a better understanding of patients…
Read MoreItaly: MC4 in corsa per la vita!
Contact Information Email: info@mc4incorsaperlavita.org Web: https://www.mc4incorsaperlavita.org/ Facebook: https://www.facebook.com/mc4incorsaperlavita/ Contact Person Mariagrazia Vescia (President) Email: mariagrazia.vescia@mc4incorsaperlavita.org Giovanni Vescia (Vice President) Email: giovanni.vescia@mc4incorsaperlavita.org Organisation Profile The association no profit “MC4 in corsa per la vita! ETS” (MC4 Running for life! ETS) was born in 2022, from the strong wiil of the family and mother Mariagrazia,…
Read MoreUSA: Sarcoma Strong
USA: Sarcoma Strong Back to members Organisation Profile OUR WHY or Vision: To see less human suffering from sarcoma. OUR HOW or Mission: To inspire Orthopaedic Oncology leaders around the US and globally to lead the way To lead efforts of continuous knowledge improvement of this rare disease Connect the global sarcoma community…
Read MoreJapan: GISTERS
Japan: GISTERS Back to members Organisation Profile GISTERS… The name sounds like the name of a baseball team, but it was originally conceived by everyone to participate in the first “Relay for Life Japan in Tsukuba” held in Japan in 2006, in other words, it was a “team” name. We want to make…
Read MoreUSA: Sarcoma Strong
Contact Information Sarcoma Strong1367 Washington Ave, Suite 209Albany NY 12206USAPhone: 5183786499Telefax: 5187012912Email: sarcomastrong@gmail.comWeb: https://sarcomastrong.com Contact Person Dr. Matthew R. DiCaprioFounder of Sarcoma Strong / Orthopedic OncologistPhone: 5183786499E-Mail: sarcomastrong@gmail.com Mrs. Blair DiCaprioDirector of public Relations and Marketing Organisation Profile
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