Sarcoma Patient Advocacy Global Network (SPAGN)

We are excited to share that the results of the second phase of the SPAGN Priority Setting Partnership (PSP) have just been published in “BMC Cancers”. This initiative has been instrumental in identifying crucial research and advocacy priorities for sarcoma patients and their carers. 🔬 Research Priorities: - Causes of Sarcoma - Prognosis and Risk of Recurrence - More Research for specific Sarcoma Subtypes - The Role of Immunotherapy and Targeted Therapies - Hereditary Aspects in Sarcomas 🗣️ Patient Advocacy Priorities: - Enhancing the Diagnostic Process - Access to Tumor DNA Analysis - Establishing an International Sarcoma Registry 🌐 Impact on the Sarcoma Community These findings will help steer future research, aid funding agencies in project assessment, and strengthen the role of patient advocates in representing our community's needs. By aligning research with the actual needs of patients and carers, we can ensure more effective and targeted treatments. Read the full publication in “BMC Cancer” here: https://lnkd.in/dA2ktHn8 #sarcoma #research #priorities #publication #patientvoice Evelyne Roets Olga Husson Winette van der Graaf Gerard van Oortmerssen Sorrel Bickley Ornella Gonzato Natalia Fernández Díaz-Cabal Bernd Kasper #KaiPilgermann #RogerWilson #MarkusWartenberg Neeltje Steeghs Kathrin Schuster

¡Mañana es el Día Nacional del Sarcoma en España! Nuestros amigos de la Fundación Mari Paz Jiménez Casado y Asarga han planeado una ENORME lista de actividades con varios hospitales de todo el país. Por favor, asegúrate de seguir a ambos grupos durante todo el día y compartir tus historias. #rarosperonosolos #somosamarillos #nosomosunsarcoma #sarcoma #sarcomapatients #Asarga #20Septiembre #díanacionaldelsarcoma See insights and ads Boost Comment

Este viernes 20 de septiembre es el día nacional del sarcoma, y en el Hospital Universitario Fundación Jiménez Díaz queremos aprovechar esta jornada para sensibilizar a la sociedad sobre esta enfermedad y potenciar el papel activo de los pacientes. Es importante crear espacios de encuentro entre profesionales y pacientes que nos ayuden a conseguir un enfoque óptimo y multidisciplinar del manejo de la enfermedad y su tratamiento, humanizar el proceso que inicia desde el diagnóstico, y una mayor información a pacientes y su entorno. ¡Os esperamos el 20 de septiembre! Javier Martin-Broto Nadia Hindi Muñiz Montiel Jiménez Fuertes, MD., PhD, FEBS EmSurg, FEBS HBP Marta M. SELNET Sarcoma European LatinAmerican Network Comunicación GEIS David S. Moura GLORIA MARQUEZ GEIS (Grupo Español de Investigación en Sarcomas) Sarcoma Patient Advocacy Global Network (SPAGN)

"For the first time, a global collection of sarcoma patient advocates agreed to develop a solution that spoke to the health environments in which almost 75% of the world population of sarcoma patients lives—an accolade we as patient advocates should trumpet to decision-makers and policymakers." In our latest blog, Lauren Pretorius, CEO of Campaigning for Cancer writes about the challenges faced by sarcoma patients in Africa, and how they are working with SPAGN to overcome them. Read more here, and please share! https://lnkd.in/d9NFQHeN

Es un place anunciar la celebración y extender a todos la invitación para la Primera Jornada para Pacientes con Sarcoma de la Ud de Sarcomas del HU Fundación Jimenez Díaz, que celebraremos en nuestro centro el próximo 20 de septiembre, Día Nacional del Sarcoma. #sarcoma #pacientes #FJD

Outstanding information from our friends and members at Sarcoma UK. Please read and share! #ChildhoodCancerAwarenessMonth

Thank you to the Irish Sun for featuring our friend and member Carol Haslam of Sarcoma Cancer Ireland. And congratulations on the new arm, Carol! Read more about Carol's story here: https://lnkd.in/djFphqmP

WHOA! We're only 135 responses short of 1,000 on our Global Sarcoma Diagnosis Pathway Survey! Sarcoma patients and caregivers, we need your input. Make your voice heard. Take the survey and pass it on! https://lnkd.in/dqFjSTSt

#Diagnosi tardive, non corrette o inaccurate hanno impatto non solo sulla qualità di vita dei pazienti con #sarcoma ma ricadono drammaticamente sulla loro possibilità di sopravvivenza Per conoscere in maniera approfondita il #percorso #diagnostico nei diversi Paesi del mondo, Sarcoma Patient Advocacy Global Network (SPAGN) ha lanciato un’indagine, rivolta ai pazienti e ai caregiver (https://lnkd.in/dX8VNMVc) Partecipare a questa indagine -dedicata esclusivamente alla DIAGNOSI nei sarcomi - ci aiuterà a conoscere più in dettaglio gli stessi dati riportati nel #LibroBiancoSarcomi. Dati assolutamente allarmanti che mostrano che, in Italia, il 49,4% degli intervistati- ovvero 1 PERSONA su 2- prima della diagnosi di sarcoma ha ricevuto diagnosi differenti, poi rivelatesi errate o non accurate. In aggiunta, rispetto alla comparsa dei primi #sintomi (dolore e/o tumefazione), il 17,5% ha dovuto attendere per la diagnosi dai 6 ai 12 mesi, il 6,5% dai 13 ai 24 mesi e il 4,8% anche più di due anni. Ovvero 1 PERSONA su 3. Per aiutare a conoscere più in dettaglio il percorso diagnostico in ogni sua singola tappa - dalla comparsa dei sintomi agli esami eseguiti- servono meno di 15 minuti di tempo, giusto il tempo per rispondere all’indagine internazionale lanciata da SPAGN. Per i pazienti https://lnkd.in/d6XmM2DD Per i caregiver https://lnkd.in/d5ahCTFK

We need EVERY piece to complete the puzzle. 🌍 As we close out #SarcomaAwarenessMonth, let’s reflect on how we work towards global cooperation to transform the lives of sarcoma patients everywhere. By sharing knowledge, resources, and best practices across borders, we can make monumental strides in research, treatment, and patient support. Increased collaboration among medical professionals, researchers, and advocacy groups means better outcomes, faster diagnoses, and more effective therapies for those battling this rare cancer. Imagine a world where every sarcoma patient has access to the latest innovations and treatments, no matter where they live. By working together, we can turn this vision into reality, providing hope and improving the quality of life for patients and their families. Let’s unite our efforts and be the change that sarcoma patients need. #SarcomaAwareness #SarcomaAwarenessMonth2024 #SAM2024 #SarcomaPatients #RareCancers #EarlyDiagnosisSavesLives #SPAGN