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Brazil: Desmóide Brasil | Associação Brasileira do Tumor Desmóide
Brazil: Desmóide Brasil | Associação Brasileira do Tumor Desmóide Back to members Organization profile: The Brazilian Desmoid Tumor Association began its activities in 2021, with the aim of welcoming diagnosed patients. When receiving a diagnosis of a rare disease, patients often feel alone in their journey. Our goal is to show…
Read MoreSarcoma Intelligent Specialist Network and How We Got Here
One of the first things a newly diagnosed sarcoma patient is told when they contact a patient support group is that they must be treated by expert doctors in a specialist centre. But no one knows how to judge whether there are experts in a centre or not. SPAGN therefore set out a year ago to work towards a universally acceptable definition of an expert centre. Such a definition would allow new patients to get a quick understanding, advocacy groups to gain deeper knowledge of their country’s resources, and doctors in centres that are developing their expertise to have a clear understanding of what we as patients expect.
Read MoreESGO-EURACAN-GCIG Uterine sarcoma guidelines
In 2023, the European Society of Gynaecological Oncology (ESGO), the EURACAN, a European Reference Network for all rare adult solid cancers and the Gynecologic Cancer InterGroup (GCIG) have agreed to start a new joint project with the goal of developing guidelines on the complete management of patients with uterine sarcomas, covering low-grade endometrial stromal…
Read MoreCTOS 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,…
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