Posts Tagged ‘patient advocate’
Your Poster @CTOS 2024
Show Off Your Advocacy Work at CTOS 2024, to the broadest international community of sarcoma experts: Create and Submit a Poster! Sarcoma patient advocacy organizations are cordially invited to participate in SPAGN’s poster presentation session that will be held at this year’s CTOS conference. This session is an opportunity for you to showcase your organization…
Read MoreACF’s European Manifesto: Addressing Critical Gaps in Research and Treatment of Rare Cancers🎗️
The Anticancer Fund (ACF) has launched its European Manifesto 2024, presenting a forward-looking strategy to position Europe as a global leader in cancer treatment innovation. With cancer rates set to rise dramatically—35 million new cases projected by 2050—there’s no time to waste. 🕒 SPAGN fully supports the goals set out by the ACF in its…
Read MoreKey Findings from Phase II of the SPAGN Priority Setting Partnership published 📝
The Sarcoma Patient Advocacy Global Network (SPAGN) has published the results of the second phase of its Priority Setting Partnership (PSP), focusing on identifying research and patient advocacy priorities in sarcoma care, in “BMC Cancer”. This initiative is groundbreaking as it actively involves patients and carers in shaping the research agenda, ensuring their voices are…
Read MoreSave the Date: SPAGN Annual Conference 2025 in Washington D.C.!📅
We are thrilled to announce that the SPAGN Annual Conference 2025 will be held in Washington D.C., USA, from April 11-13, 2025. This will be our first conference in the United States, marking a significant milestone for our global community. This highly anticipated event will bring together patient advocates from around the world to discuss…
Read MoreSarcoma Awareness Month 2024 is approaching quickly: Join our campaign!
Sarcoma Awareness Month is held annually in July, a time when the global sarcoma community comes together with a unified mission: to raise awareness about this rare and often overlooked group of cancers and to highlight the unique challenges faced by patients and their families. The Importance of Early and Accurate Diagnosis This month is…
Read MoreSix great examples of sarcoma patient advocacy to follow this year!
This year’s winning projects of the SPAGN Advocacy in Action Awards demonstrate the creativity, deep insights into patients concerns, dedication and professionalism of our members to help improve sarcoma patients access to care and quality of life. A big applause!
Read MoreMy lumpy life as a young adult
“After a shower, I noticed an odd lump on my left hip. Two weeks passed, but Lumpy—the name I declared this mysterious lump—remained. Luckily, I had a when in doubt, check it out mentality…” Read about Matt’s sarcoma journey and find out why sarcoma is like skydiving.
Read MoreSomos raros, mas juntos somos mas fortes!
Juntas, duas pacientes brasileiras com tumor desmoide, Carolina Menezes e Georgia Garofalo, fundaram a Desmoide Brasil em 2021. Desde então, a Desmoide Brasil tem – entre outras iniciativas — organizado simpósios, montado exposições, lançado um registro de pacientes, escrito um livreto de boas-vindas para novos pacientes, e estabelecido uma comunidade online ativa no Facebook e WhatsApp. Sua história é uma inspiração!
Read MoreWe are rare, but together we are stronger!
Together, two Brazilian desmoid tumor patients, Carolina Menezes and Georgia Garofalo, founded Desmoide Brasil in 2021. In the years since then, Desmoide Brasil has – among other things — hosted symposia, organized an exhibition, launched a patient registry, penned a welcoming booklet for new patients, and established a thriving online community on Facebook and WhatsApp. Their story is an inspiration!
Read MoreShould I join a clinical trial?
When you have been diagnosed with sarcoma you are faced with making important, and at times daunting decisions about treatment. Amongst the treatment choices, a clinical trial may be an option. But how do you know if it is a good option for you? Is it something you should even consider? Denise Reinke asks 6 key questions about clinical trials and provides helpful answers for sarcoma patients to consider.
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