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ROGER EXPLORES… the evolution of clinical trials
Exciting progress is made in the field of clinical trials, finds Roger Wilson. He has participated in several exercises of clinical trial design as a patient advocate. Roger explains the what’s what of the latest developments.
Read MoreUSA: DSRCT Initiative
USA: DSRCT Initiative Back to members Mission of the DSRCT Initiative: To unite everyone impacted by Desmoplastic Small Round Cell Tumor (DSRCT) through community, awareness, accessible disease resources, and direct family support, pursuing a world where no one faces this disease alone or without hope. What we’ve accomplished so far in 2026: The dsrct-initiative.org…
Read MoreUganda: Action Against Cancer
Uganda: Action Against Cancer (AACA) Back to members Organisation’s profile Action Against Cancer (AACA) is a patient-centred cancer advocacy organisation in Uganda dedicated to improving the lives of people affected by cancer. Our mission is to promote cancer awareness, early detection, access to quality care, patient empowerment, and support throughout the cancer journey. Our activities…
Read MoreNew Zealand: The Sarcoma Foundation New Zealand
New Zealand: The Sarcoma Foundation New Zealand Back to members Mission statement: The Sarcoma Foundation New Zealand was established to support Patients and Families ( Whanau) who are dealing with a diagnosis of sarcoma or other connective tissue tumour. We provide patient information and hold patient centred events to help with the knowledge gap for…
Read MoreUSA: Sarcoma Foundation of America
USA: Sarcoma Foundation of America Back to members Organisation Profile Mission The mission of the Sarcoma Foundation of America (SFA) is to advocate for sarcoma patients by funding research and by increasing awareness about the disease. The organization raises money to privately fund grants for sarcoma researchers and conducts education and advocacy efforts on…
Read MorePatient pathways must improve in Bulgaria – First national campaign on sarcoma shows how
The bitter experience of not finding the information they needed when their son was diagnosed with osteosarcoma, made Lidiya Vitanova and her husband give a promise: No family in Bulgaria should navigate sarcoma alone. They founded Together Fighting Sarcoma and pulled off a national campaign which won the third place of SPAGN’s Advocacy in Action Awards.
Read MoreMoldova: Viața Continuă – Oncology Patients Association
Moldova: Viața Continuă – Oncology Patients Association Back to members Organisation Profile Viața Continuă – Oncology Patients Association is a non-governmental patient organization from the Republic of Moldova dedicated to supporting people affected by cancer and their families. Our work focuses on improving access to reliable information, psychosocial support, quality healthcare services, and…
Read MoreYour Poster @CTOS 2026
📣 Share Your Advocacy Work with the Global Sarcoma Community at CTOS 2026 FAQs: Showcase your work. Share your impact. Strengthen the patient voice. SPAGN invites sarcoma patient advocacy organizations from around the world to showcase their work as part of the Patient Advocacy Poster Wall at CTOS 2026. The Poster Wall is an opportunity…
Read MoreUSA: Solitary Fibrous Tumor Foundation
USA: Solitary Fibrous Tumor Foundation Back to members SFTF profile, mission and activities The Solitary Fibrous Tumor Foundation is a patient-led nonprofit organization dedicated to improving outcomes for people affected by solitary fibrous tumor, a rare soft-tissue sarcoma. Our mission is to connect patients, caregivers, clinicians, researchers, and partner organizations; expand access to reliable…
Read MoreSeliSarc
Selinexor Plus Gemcitabine in Selected Advanced Soft-tissue Sarcoma (SeliSarc) Agent: Selinexor (KPT-330) in combination with gemcitabine Phase I/II Status Recruiting Sponsor SELNET For further information please also consult https://www.clinicaltrials.gov/study/NCT06114004 This is a Phase I-II trial, assessing safety and toxicity as well as early efficacy data of a combination therapy with Selinexor (KPT-330) and gemcitabine,…
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