Don't miss our newest blog post from Editor in Chief, Gabi Ott, highlighting the winning projects for this year's Advocacy in Action awards. Congratulations to all of our winners! https://lnkd.in/dU9zCZhY #SPAGN2024 #AdvocacyInAction #Sarcoma #PatientAdvocate #rarecancer
Sarcoma Patient Advocacy Global Network (SPAGN)
Wellness and Fitness Services
Wölfersheim, Hessen 780 followers
Working together, making a difference.
About us
SPAGN is the global network of Sarcoma Patient Advocacy Organisations who support one other and provide a common, influential, international patient voice. Our joy and passion in working across borders drive us to achieve necessary change together with our collaborators.
- Website
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http://www.sarcoma-patients.org
External link for Sarcoma Patient Advocacy Global Network (SPAGN)
- Industry
- Wellness and Fitness Services
- Company size
- 2-10 employees
- Headquarters
- Wölfersheim, Hessen
- Type
- Nonprofit
- Founded
- 2009
Locations
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Primary
Get directions
Untergasse 36
Wölfersheim, Hessen 61200, DE
Employees at Sarcoma Patient Advocacy Global Network (SPAGN)
Updates
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🎉 Exciting News! 🎉 We're thrilled to announce the publication of our groundbreaking paper, "What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer," in the prestigious journal Cancers! This pivotal work, led by the Sarcoma Patient Advocacy Global Network (SPAGN) and top sarcoma experts, defines what we consider truly makes a sarcoma specialist center. Our research highlights the immense benefits of specialist centers and introduces the term 'Sarcoma Intelligent Specialist Network' (SISN), striving for the best care for sarcoma patients worldwide. From multidisciplinary team approaches to cutting-edge treatments, this paper sets the standard for optimal sarcoma care. This publication is a true labor of love for SPAGN, reflecting our dedication to guaranteeing that sarcoma patients receive the best standard of care no matter where they live. We believe every patient deserves access to expert treatment and comprehensive care. Cancers is a peer-reviewed, open access journal of oncology published by MDPI. It is highly visible and indexed in major databases like Scopus, PubMed, and Web of Science. A huge thank you to the authors who contributed to this work: Roger Wilson, Denise Reinke, Gerard van Oortmerssen, Ornella Gonzato, Gabriele Ott, Chandrajit P. Raut, Ashleigh Guadagnolo, Rick L. M. Haas, Jonathan Trent, Robin Jones, Lauren Pretorius, Brandi Felser, Mandy Basson, Kathrin Schuster, and Bernd Kasper. Special thanks to Roger Wilson for leading this effort with such passion and dedication. Dive into the full paper to discover how we aim to transform sarcoma treatment and care! Click the link to read more: https://lnkd.in/deFpR_fn Let's spread the word and make a difference together! 💪📖 #SarcomaCenters #SarcomaCare #SPAGN #CancerResearch #SarcomaSpecialistNetwork #SISN #CancersJournal #RareCancers #Sarcoma #SarcomaPatients #PatientAdvocacy Thank you for your support, and let's continue to work towards better care for sarcoma patients everywhere! 🌍❤️ Fondazione Paola Gonzato-Rete Sarcoma ETS Campaigning for Cancer Sarcoma Foundation of America Sock it to Sarcoma! Connective Tissue Oncology Society
What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer
mdpi.com
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¡No se pierda nuestro próximo Webinar el 24 de mayo de 2024! Este webinar es para pacientes con sarcoma, cuidadores y defensores de pacientes de Centro y Sudamérica, realizado en español y portugués por especialistas en sarcoma de Costa Rica y Brasil en esta ocasión. El webinar tendrá lugar el 24 de mayo de 2024 y versará sobre el tema "Encontrar el especialista adecuado para sarcomas". Los sarcomas son un grupo de cánceres raros del tejido conectivo o del hueso. 📅 Reserve la fecha: 24 de mayo de 2024. 🕖 Hora: 18:00 hora local Brasil, Argentina, Paraguay / 15:00 hora local Costa Rica 🔗 Enlace de inscripción: https://lnkd.in/dHJRGaXU Ponentes: 🎙️ Dra. Bruna David - Instituto Nacional de Câncer, Rio de Janeiro, Brasil (Habla en portugués). 🎙️ Dra. Natalia Jiménez-Brenes - Hospital San Rafael Arcángel de Guanacaste, Costa Rica (Habla en español). Nuestros ponentes hablarán de la importancia de ser tratado por el especialista adecuado, de los retos a los que a menudo se enfrentan los pacientes a la hora de encontrar el médico adecuado para su enfermedad y de cómo superar estas dificultades. Este seminario web sirve como plataforma educativa para difundir información valiosa sobre el sarcoma y fomentar el debate entre profesionales sanitarios, investigadores y pacientes. Reserve su plaza inscribiéndose a través del siguiente enlace. #sarcoma #sarcomapatients #sarcomacancer #cancerpatients #webinar https://lnkd.in/dHJRGaXU
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Sarcoma Patient Advocacy Global Network (SPAGN) reposted this
📢 Webinar Alert! Join Myeloma Patients Europe (MPE) and Acute Leukemia Advocates Network (ALAN) for our upcoming webinar on "The new EU Health Technology Assessment (HTA) regulation and implications for European and national patient organisations and patients" on 22 May from 15:00 to 16:00 CEST. Learn about the EU HTA regulation and its impact directly from Béla Dajka, Policy Officer at the European Commission. Register now here: https://lnkd.in/dsGid26A Send your questions in advance to info@mpeurope.org. #EUHTA #PatientAdvocacy
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What a wonderful initiative and so important for sarcoma patients in Costa Rica and the whole of Latin America. Thank you for your dedication, Javier Martin-Broto, David S. Moura, Nadia Hindi Muñiz and team! #sarcoma #rarebutnotalone #SarcomunicándonosAméricaLatina
Sarcoma Medical Oncologist at the University Hospital Fundacion Jimenez Diaz (Madrid) / Research Group ATBsarc Leader at Villalba General Hospital and the CITIUS III (Seville)
On April 18th and 20th, meetings took place in San José and Puntarenas, Costa Rica, regarding updates in the field of sarcomas. The multidisciplinary teams (MDTs) for sarcomas from national and regional hospitals gathered to reflect on the functioning of these committees in their environments, and on access to active drugs in sarcoma. While progress has been made in Costa Rica, significant room for improvement remains in advancing the management of this group of rare diseases. Many thanks to Natalia Jimenez, Ronal Badilla, and Rodolfo Guzmán among others, for their relevant contributions to sarcoma care in Costa Rica. The Onco-Life event, which brought together expert oncologists from Central America, reviewed the latest updates in sarcomas, among other types of cancer. Thanks to Asofarma/Adium for continuing to bet on rare cancers.
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Only TEN DAYS LEFT until our 2024 SPAGN Annual Conference! This year we are gathering in #Rome and celebrating #15yearsofSPAGN. Are you coming? Like, comment, and share this post, and we will see you soon. For those who can't attend in person, we hope you will follow along from home as we post regular updates throughout the conference. #SPAGN2024 #sarcoma #patientadvocates
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#HappyEaster to all who celebrate! We thought: What better way to celebrate this day than to share the story of a young person who got a new lease on life? Read our latest blog from Sarcoma patient, Matt Sha. https://lnkd.in/dUH_cA_c
My lumpy life as a young adult
sarcoma-patients.org
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Wishing all who celebrate a joyful and Happy Holi! Especially our member groups from India, DigiSwasthya Foundation, Friends of Max, and V Care Foundation! SPAGN is privileged to bring together cultures from all over the world as we are united in our common goal of finding a cure for sarcomas and improving the lives of people impacted by sarcoma.
Wishing you a colorful and joyous Holi from DigiSwasthya Foundation! 🎉 May this festival bring happiness, prosperity, and vibrant celebrations to your life. 🌈 #happyholi #fun #colourful #festival Leena Saxena, Megha Terse - Mandke, Dr Anusha Agarwal , Dr. Prakash Chitalkar, Dr. Natasha Lalwani, Dr. Pallavi Purwar, Dr. Ravi Landge, Dr. Seenu Yadav(PT), Dr. Swati Singh, Harshita Gupta, Mansvi Ahuja, Dr.Uzma Ansari, Dr. Nikhil Jatav, Dr. lalitha kudumula Reddy, Dr. Swapnil Saurabh Deka, Deepali Choudhary RD, Dr. Rajesh Bollam Atal Incubation Centre-Rambhau Mhalgi Prabodhini, Atal Innovation Mission Official , SmartGaon Development Foundation, Dr Saantwana Vernekar, Augnito, Druva, SVP India
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Sarcoma Patient Advocacy Global Network (SPAGN) reposted this
Muito feliz por ter sido convidado a participar do primeiro webinar para pacientes com sarcoma de toda a América Latina promovido pelo SPAGN (Sarcoma Patient Advocacy Global Network). Estaremos juntos no dia 22 de Março! #sarcoma #sarcomapatients A.C.Camargo Cancer Center
¡Sucede en 3 días! 📅 Reserve la fecha: 22 de marzo de 2024 🕖 Hora: 19:00 hora local (Brasil, Argentina, Paraguay) 🔗 Enlace de inscripción: Regístrese aquí Oradores: Matías Chacón - Instituto Alexander Fleming de Buenos Aires, Argentina (Habla en español) Dr. Fernando Augusto - A.C. Camargo Cancer Center, São Paulo, Brasil (Habla en portugués) #sarcoma #sarcomapatients #sarcomacancer #cancerpatients https://lnkd.in/d3HAaN_B
First Webinar “What is a Sarcoma?” in Spanish and Portuguese, March 22, 2024!
https://www.sarcoma-patients.org
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¡Sucede en 3 días! 📅 Reserve la fecha: 22 de marzo de 2024 🕖 Hora: 19:00 hora local (Brasil, Argentina, Paraguay) 🔗 Enlace de inscripción: Regístrese aquí Oradores: Matías Chacón - Instituto Alexander Fleming de Buenos Aires, Argentina (Habla en español) Dr. Fernando Augusto - A.C. Camargo Cancer Center, São Paulo, Brasil (Habla en portugués) #sarcoma #sarcomapatients #sarcomacancer #cancerpatients https://lnkd.in/d3HAaN_B
First Webinar “What is a Sarcoma?” in Spanish and Portuguese, March 22, 2024!
https://www.sarcoma-patients.org