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Dear SPAGN Members and Friends,
as summer comes to an end in the Northern hemisphere and spring starts in the Southern hemisphere, it's getting busy again in the sarcoma world. Find below what's new and how you can get involved with SPAGN and sarcoma community.
All the best from the
SPAGN Board of Directors & Team
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| Stay updated with Voices of Sarcoma!🗣️ |
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Bridging the Gap in Sarcoma Care: A Vision for South Africa
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Imagine receiving a diagnosis of a rare, aggressive cancer, only to find that the necessary expertise and treatment options are beyond reach. This is the reality for many sarcoma patients in South Africa and other low-to-middle-income countries, where the healthcare system faces a plethora of challenges. Yet, with a collective vision, dedicated effort, and political will, sarcoma care can be transformed, ensuring that every patient receives the specialised attention they need.
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| Sarcoma Awareness Month 2025: Start planning with us, join the discussion! |
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Sarcoma Awareness Month (SAM) 2024 showed us that we can be impactful if we work together. Together and across countries, we shared powerful patient stories, raised awareness with our toolkit, and launched a survey on the diagnosis pathway, which has seen strong participation.
Looking ahead to 2025, our goal is to build on this momentum and make an even greater impact. To kickstart this process, we are inviting you to a meeting to share and discuss ideas, feedback, and suggestions on how we can enhance our efforts and achieve even more in 2025.
The meeting will be held
📅 September 17th at 5:00 PM CET.
We are looking forward to our discussions and working alongside you to make 2025 our best year yet.
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| 2024 CTOS Fall Webinar on "Dedifferentiated Liposarcoma" |
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“Dedifferentiated Liposarcoma” is the "Sarcoma of the Year 2024". This webinar is designed to bring experts and experienced patient advocates up to speed in advance of the 2024 CTOS Annual Meeting in November.
The patient perspective will be provided by Gabi Ott, editor in chief of the SPAGN blog "Voices of Sarcoma". Registration is free.
October 10, 9-11am EST / 3-5pm CET
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| Research Grant Cycle for Osteosarcoma by MIB Agents: Opening soon! |
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OutSmarting Osteosarcoma is an annual research grant program that started in 2017. Since then, MIB Agents has supported 22 investigators and awarded $1,800,000 to support osteosarcoma research. (Applicants must be a legal US resident at a US institution.)
The 2025 grant cycle will include two funding mechanisms. The OutSmarting Osteosarcoma Hero Award is a $100,000 grant and the OutSmarting Osteosarcoma Young Investigator (YI) Hope Award is a $50,000 grant.
The Letter of Intent (LOI) submission period will open on September 27, 2024. LOIs are due by October 25, 2024 at 11:59pm ET. Applicants who submit a LOI and are approved will then be invited to submit a full application by January 26, 2025.
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Become a SPAGN volunteer! |
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Join our blog team as volunteer editor!
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We are looking for volunteers to serve on the Editorial team of SPAGN’s blog “Voices of Sarcoma”.
The Blog covers topics of interest to the wider SPAGN community, with the aim of conveying information, sharing experiences and viewpoints, and strengthening the bonds of the SPAGN community.
You like to write and edit, be part of a small and dynamic team, are creative and like to work internationally? Contact us on info@sarcoma-patients.org
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We are looking forward to hearing from you!
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Consulting for sarcoma research: Patients and Caregivers wanted!
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From time to time, SPAGN needs patients and carers with 'lived experience' of sarcoma to advise on research or regulatory matters.
We aim to create a database of volunteers for this purpose. Participation is often voluntary, though there may occasionally be payment. These meetings usually use English, so a good understanding and some spoken ability is needed.
If you'd like to be included, please have a look at our form and read some more details.
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| Calling on all sarcoma patients & caregivers: Make your experience count, take the survey! |
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The Importance of Early and Accurate Diagnosis of Sarcomas 🩺🕒
Misdiagnosis and delays in diagnosis are common in sarcomas. But we are aware that the experiences of sarcoma patients with the diagnosis vary greatly and that too little is known about it worldwide. We invite you to share your experiences with us, whether they are positive or negative. Your feedback will help us understand the different experiences on the path to diagnosis.
Please take a little bit of time to share your journey with us!Your input is crucial in helping us address these gaps and improve the diagnostic journey for all sarcoma patients!
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Sarcoma Patient Advocacy Global Network e.V./Assoc.,
Untergasse 36,
61200 Wölfersheim/Germany
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