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France: SOS Desmoide France
France: SOS Desmoide France Back to members Organisation Profile Its aim: like most PAGs, it is to develop the awareness of this disease, stimulate research, inform & support patients. It started in 1998. The core of our organisation lies in a team of about ten persons who meet every month. It is worth noting that the…
Read MoreGermany: Deutsche Sarkom-Stiftung/German Sarcoma Foundation
Germany: Deutsche Sarkom-Stiftung/German Sarcoma Foundation Back to members Organisation Profile The Foundation was launched with the aim of advancing our understanding of oncology, specifically relating to sarcomas, gastrointestinal stromal tumours (GIST) and desmoid tumours, as well as other rare soft tissue and bone tumours (e. g. tenosynovial giant cell tumours (TGCT)/pigmented villonodular synovitis (PVNS)…
Read MoreGermany: SOS Desmoid
Germany: SOS Desmoid Back to members Organisation Profile sos-desmoid was founded as a charitable organization on 21st November 2009 in Mannheim, Germany. It was initiated by Prof. Peter Hohenberger (an oncologist and researcher of desmoid tumors) of the university of Mannheim and Miss Anja Herrmann (a psychologist) from Berlin and several students of psychology…
Read MoreIndia: SPANDAN (VCare)
India: SPANDAN (VCare) Back to members Group Profile V Care Foundation is a voluntary support group dedicated to providing free help, hope, awareness and education to cancer patients and their families through outreach programs and services that improve the quality of their lives. V Care is a voluntary organization. Honorary volunteers group is a…
Read MoreIndia: Friends of Max
India: Friends of Max Back to members Group Profile Friends of Max (www.friendsofmax.info) is the Support Group arm of The Max Foundation in India and is registered as a Public Charitable Trust. Its objective is to increase awareness and act as a patient support/advocacy group for underserved chronic myeloid leukaemia (CML) and gastrointestinal stromal…
Read MoreHungary: Recovering Together Association/Gyógyulj Velünk Egyesület
Hungary: Recovering Together Association/Gyógyulj Velünk Egyesület Back to members Organisation Profile The Recovering Together Association was created to raise awareness of cancer and to support those affected in all life situations. How can we help? We organize lectures in talks with oncologists, other specialists, oncopsychologists, dietitians, physiotherapists, nurses. We publish up-to-date and authentic information on…
Read MoreSPAGN Annual Conference Registrations Are Now Open – Secure Your Spot Today!
Registration for SPAGN Annual Conference 2024 Is Now Open We are thrilled to announce that registration is now open for the SPAGN Annual Conference 2024, a radiant exchange of knowledge and inspiration for the global sarcoma community! Join us for this transformative event, meticulously crafted to facilitate learning, foster capacity building, and provide a unique…
Read MoreFrom Glasgow to Guyana
Anyone who has a sarcoma or a suspected sarcoma should be seen by sarcoma specialists. This is what we advocates say over and over again in the hope that patients will have better treatment outcomes. Yet in many countries of the world there is no doctor with such expertise. Every year, a Scotland-based orthopedic surgeon and sarcoma expert dedicates part of his leave to teaching and operating in countries where patients do not have access to a specialist surgeon. Here we tell the story of an amazing volunteer initiative.
Read MoreSubmissions open for 2023/24 Advocacy in Action Awards
Each year SPAGN awards special recognition to member groups advancing patient rights and improving patient support. The submissions are OPEN for 2023/2024 projects. Winners will be selected by a panel of judges and announced at the 2024 SPAGN Annual Conference in Rome.
Read MoreLIBRETTO-121: LOXO-292 (Selpercatinib) in Advanced Pediatric Solid & CNS Tumors
Treatment of Oral LOXO-292 (Selpercatinib) in Pediatric Patients with advanced solid tumors Agents: LOXO-292 Phase I/II Status Active, not recruiting Sponsor Loxo Oncology, Inc. (Eli Lilly) For further information please also consult ClinicalTrials.gov. This is a Phase 1/2 study of oral LOXO-292 in pediatric participants with an activating rearranged during transfection (RET) alteration and…
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