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

📣 A revision to the Global Consensus Paper on desmoid tumor management has been published thanks to the hard work and collaboration of an international group of physicians, scientists, and patient advocates (collectively known as "The Desmoid Tumor Working Group"). Peter Hohenberger, MD, PhD, Bernd Kasper, MD, PhD, and Alessandro Gronchi, MD, led the group on this project. By evaluating existing evidence from prior scientific publications, and incorporating the input of desmoid experts worldwide, the paper is a revised and updated evidence-based consensus on the management of desmoid tumors. It answers critical questions regarding approach to treatment recommendations, types of treatments, and pain management. As there are varying treatments used for desmoid tumors and access to medical therapies and information greatly varies by country, many patients are treated based on the experience and expertise of a single physician which may be limited. DTRF has made it a priority to improve this situation by supporting the revision of this collaborative paper. The paper is, in part, the result of a 2023 DTRF grant, entitled “An evidence-based 2nd consensus on the treatment for desmoid tumors.” Currently, the paper is only accessible with a subscription through JAMA Oncology. After one year, a full version will be available. 🔗 Access the revised Global Consensus Paper here: https://lnkd.in/exWKCUbS ⭐ Patient guidelines will be developed and shared with the community as soon as they are published. #Desmoid #DesmoidTumors #DesmoidTumor #aggressivefibromatosis #DTRF #DesmoidTumorResearchFoundation #Desmoidian #desmoidresearch #raredisease #sarcoma #sarcomaresearch #sarcomaawareness #oncology #research #hope

💻 Register today for next week's educational webinar on October 23rd @ 12PM ET entitled, “Cryoablation: What We Do and Don't Know." This webinar is hosted by the DTRF with special guests Bernd Kasper, MD, PhD, Professor, University of Heidelberg, Mannheim University Medical Center in Germany and Jean-Emmanuel Kurtz, MD, PhD, Professor of Medical Oncology from Strasbourg University- Hôpitaux Universitaires de Strasbourg in France. During this webinar, Dr. Kurtz will talk about how cryoablation is performed and how it works. He'll also cover what we do and don't know about this targeted treatment option for desmoid tumors. Dr. Kasper will broaden the scope by touching on systemic treatments. After these talks, we'll open up for questions from the community. 🔗 Learn more about this webinar and register here: https://lnkd.in/eYqdDJxH #desmoidtumorawareness #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #FAP #OrphanDisease #raredisease

This week is Bone Cancer Awareness Week, and today we're talking about chondrosarcoma. Chondrosarcoma is a type of bone cancer that develops in the cartilage cells. It can happen at any age, but it mostly affects adults over the age of 40. If you are concerned about any symptoms, you should visit your GP. Or, if you want to talk to someone, our Support Line experts are here for you on 0808 801 0401. Share to raise awareness 💙 sarcoma.org.uk/bone #BoneCancerAwarenessWeek #BoneCancerAwareness #SarcomaAwareness #SarcomaUK

This week is Bone Cancer Awareness Week, and today we're talking about Ewing sarcoma. Ewing sarcoma makes up around 14% of all bone cancer diagnoses, is more common in older children and teenagers. If you are concerned about any symptoms, you should visit your GP. Or, if you want to talk to someone, our Support Line experts are here for you on 0808 801 0401. Share to raise awareness 💙 sarcoma.org.uk/bone #BoneCancerAwarenessWeek #BoneCancerAwareness #SarcomaAwareness #SarcomaUK

肉瘤患者在及時獲得疾病診斷或正確診斷方面經常面臨重大的延誤和挑戰。其中有些問題是由於經濟條件或能否獲得合格的專家診斷所造成的，而不同國家的情況可能大相逕庭。 #SPAGN已開發史上第一份全球患者調查，以瞭解世界各地肉瘤患者的診斷途徑。目前已有來自各大洲的近千名肉瘤患者和照護者參與，但我們需要更多的資料。 如果您或您的親人被診斷出患有肉瘤，我們希望聽到您的意見。您的參與將協助 SPAGN 了解肉瘤患者所面臨的障礙，以及如何提倡解決方案。 您在現實世界中的經驗值得被聆聽和計算。您可以幫助領導全球肉瘤社群改善診斷流程、提供更好的治療方案，並提高對肉瘤症狀的認知，從而改善全球肉瘤患者的生活。 準備好加入了嗎？按這裡完成調查！ https://lnkd.in/dw7RqXPE #肉瘤# #肉瘤癌症# #罕見癌症# #肉瘤患者# #病患代言人# #癌症# #病患問卷調查#

Español: «Zoom Café» fue creado con el objetivo de reunir a personas que viven con sarcoma y también a pacientes que viven con tumores desmoides. Desde Sarcomunicándonos Latinoamérica, a través de SPAGN (Sarcoma Patient Advocacy Global Network), invitamos a pacientes, familiares y cuidadores de personas que viven con sarcoma y tumores desmoides a vivir un momento de unión, de compartir, de apoyar este proyecto que comenzó en 2024 y que tiene como objetivo brindar información. Somos raros y necesitamos unirnos para tener acceso a la información, con el objetivo del autocuidado, de la autonomía, de ser los protagonistas de nuestro viaje. Creemos conexiones, derribemos los muros del miedo y la inseguridad, construyamos «puentes». Puentes de acceso a la salud, puentes de información sobre tu tratamiento, de búsqueda de calidad de vida, de bienestar, de realización, y así juntos crearemos puentes hacia el futuro. Ayúdanos a construir puentes hacia la vida. Conozcámonos. Personas de diferentes nacionalidades, diferentes ideas, pero todos con el mismo objetivo. Trabajar juntos, marcar la diferencia. #sarcoma #PacientesDeSarcoma https://lnkd.in/dBSYKSd3 ------------- Português: O Zoom Café foi criado com o objetivo de reunir pessoas que vivem com sarcoma e também pacientes que vivem com tumor desmoide. Nós do Sarcomunicándonos América Latina, por meio da SPAGN (Sarcoma Patient Advocacy Global Network), convidamos pacientes, familiares e cuidadores de pessoas que vivem com sarcoma e tumor desmoide, para vivenciar um momento de união, de compartilhar, de apoiar esse projeto que começou em 2024 e que tem como objetivo levar informação. Somos raros e precisamos de nos unir para que possamos ter acesso à informação, com o objetivo de autocuidado, de autonomia, de sermos os protagonistas da nossa jornada. Vamos criar conexões, vamos derrubar os muros do medo e da insegurança, vamos construir “pontes”. Pontes de acesso à saúde, pontes de informação sobre o seu tratamento, buscando qualidade de vida, bem-estar, plenitude, e assim juntos criaremos pontes para o futuro. Nos ajude  a construir pontes para a vida. Vamos nos conhecer. Pessoas de diferentes nacionalidades, diferentes idimoas, mas todas com o mesmo objetivo. Trabalhando juntos, fazendo a diferença. #sarcoma #PacientesDeSarcoma 

Join us! Exchange for sarcoma patients and caregivers in Latin America, in Spanish and Portuguese! October 18, 2024, 18:00h São Paulo time #sarcoma #sarcomunicandonos

Ready for some weekend reading? 🤓 🗞️The ESGO-EURACAN-GCIG Uterine Sarcomas Guidelines were recently published in the International Journal of Gynecological Cancer. 👉 https://lnkd.in/eA2kYShY Thank you to chairs Isabelle Ray-Coquard (ESGO), Paolo Casali (EURACAN) & Michael Friedlander (GCIG) and the rest of the working group for this important collaboration! #uterinecancer #endometrialcancer #wombcancer #gynonc #oncoalert International Journal of Gynecological Cancer (IJGC)

On September 27th and 28th, the annual meeting of the National Leiomyosarcoma Foundation (NLMSF) is being held at Princess Margaret Hospital in Toronto. Hosted by Albiruni Razak and with the tireless efforts of Rebecca Gladdy, Jasmine Lee, and Michel Achee, among many others, this event brings promising news for leiomyosarcoma patients. One highlight is the significantly prolonged progression-free survival (1 year) in the first line of treatment with the combination of Doxorubicin and Trabectedin, as reported by the French group led by Patricia Pautier and recently published in NEJM. Additionally, there is an impressive 56.5% response rate observed with the combination of Doxorubicin+DTIC and Nivolumab in the first line of advanced disease, based on mature data from a study that will soon be published in JCO. A heartfelt thanks to NLMSF for their relentless energy in continuing to research LMS, aiming to develop new and effective treatments for our patients. National Leiomyosarcoma Foundation (NLMSF); Albiruni Ryan ABDUL RAZAK; Mitchell Achee, M.D.