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WECAN Patient Experience Data (PED) online course launching on World Cancer Day
Are you part of a patient organisation that wants to shape healthcare decisions, but doesn’t always know where to start? On 4 February, WECAN Foundation will launch a free online course on Patient Experience Data (PED) for patients, advocates, patient leaders but also people interested in generating PED within the cancer advocacy work. This launch comes at a time when patient experience and quality of life are receiving…
Read MoreROGER EXPLORES… Ultrasound
In the panoply of new technologies for treating cancer ultra-sound barely gets a mention. In this blog post Roger Wilson discovers how it is developing as a treatment. He explains why he believes this a worthwhile process to observe.
Read More🧪 New study arm in rEECur trial with Trabectedin for relapsed Ewing sarcoma
Birmingham/Manchester, UK, January 21, 2026 Ewing sarcoma, a rare bone and soft tissue cancer in children and young adults has poor outcomes at relapse. The drug trabectedin offers a hopeful new option for treatment. Patient advocates have collaborated with investigators and the manufacturer of trabectedin, to open a new treatment arm containing trabectedin within rEECur,…
Read MoreUSA: The Desmoid Project
USA: The Desmoid Project Back to members Organization Profile, Mission, and Activities The Desmoid Project (TDP) is a patient-founded, trauma-informed nonprofit organization dedicated to supporting individuals and families affected by desmoid tumors. Mission Statement: The organization’s mission is to support every person impacted by desmoid tumors through compassionate care, trauma-informed mental health services, and community…
Read MoreTanzania: Feliciana Mshanga Memorial Cancer Foundation (FMMCF)
Tanzania: Feliciana Mshanga Memorial Cancer Foundation (FMMCF) Back to members Legal Status & Location: Registered nonprofit organization under the laws of Tanzania Registration No: 00NGO/R/9012 Headquarters: Dar es Salaam, United Republic of Tanzania Organizational Profile: The Feliciana Mshanga Memorial Cancer Foundation is a patient-centered nonprofit organization working to improve cancer prevention, early detection,…
Read MoreUSA: The Bardo Foundation
USA: The Bardo Foundation Back to members Organisation Profile The Bardo Foundation is dedicated to transforming the landscape of outcomes for children and young people diagnosed with osteosarcoma, a rare and aggressive bone cancer that most commonly affects adolescents. Inspired by the experience of the founders’ son, Bernardo (“Bardo”), who was diagnosed with osteosarcoma…
Read MoreUK: Edward Showler Foundation
UK: Edward Showler Foundation Back to members Organisation The Edward Showler Foundation is a UK registered charity funding research to find a cure for Clear Cell Sarcoma. The Foundation was set-up in memory of Dr Edward Showler, who died from Clear Cell Sarcoma in June 2017, at the age of 28. The Edward Showler Foundation has…
Read MoreReflecting on 2025: The global sarcoma community is shaping up
This year has seen remarkable progress in global sarcoma collaboration, with SPAGN ensuring that the patient voices are heard in several research and policy projects. The power of collaboration and the many people joining forces to achieve tangible outcomes for sarcoma patients worldwide gives Kathrin Schuster, SPAGN Chief executive, confidence for the future – which holds indeed quite a number of challenges for a cancer field that has been chronically underfunded for decades. Read here, why.
Read MoreBone cancer advocacy work winning multiple awards: BCRT social media campaign seen 3 million times
The Bone Cancer Research Trust this year received the inaugural Paola Gonzato Memory Award, dedicated to projects in bone sarcoma. They also took the second place in SPAGN’s Advocacy in Action Awards. From educating future doctors on sarcoma to raising vital awareness through marketing campaigns, both awards highlight the importance of putting patients at the centre of all organisational activities. Silvia Kraft from BCRT presents their success projects.
Read MoreUSA: Synovial Sarcoma Foundation
USA: Synovial Sarcoma Foundation Back to members Organisation Profile Mission Our mission is to transform the future of synovial sarcoma treatment by driving groundbreaking research, expanding clinical resources, and fostering a strong patient and caregiver community. Profile & Background Synovial sarcoma is a rare and aggressive cancer with limited treatment options, which makes coordinated…
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