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Artificial intelligence – what does it mean to us?
We live in truly interesting times, finds Gerard van Oortmerssen, Co-Chair of the SPAGN Board. The latest wave of digital revolution, artificial intelligence, creates new opportunities for sarcoma patients and patient advocates. AI can facilitate access to information and peer-to-peer support. Moreover, it allows to collect patient reported outcomes and thus give sarcoma patients a stronger voice and say in research and care.
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 MoreThe lump is gone — finally!
About ten months ago, Roger Wilson shared with us the experience of finding a lump – again. It was a benign cyst, and for the first time, he had a choice as to whether or not to have a surgery. Roger decided to have the lump removed, and it is finally gone. Relieved and grateful to his tumour team, Roger gives us the continuation of his story.
Read MoreFrom chaos to control: Three decades in the continuum of care
We celebrate with V Care 30 years of patient advocacy work in Mumbai, India and other states! Integral part of this pioneering cancer patient association is Spandan, a welcoming space for those affected by sarcoma. Spandan means ‘heartbeat’ in English. Vandana Gupta, founder of V Care, explains their mission, success and lessons learnt along the way.
Read MoreWhat is a sarcoma specialist center?
On May 13, 2024, SPAGN published a paper in “Cancers” on the definition, core principles and features of a sarcoma specialist center, developed by patient advocates and healthcare professionals together. The management of sarcomas in specialist centers delivers significant benefits. In much of the world, specialists are not available, and the development of expertise 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 MoreUSA: The Life Raft Group
USA: The Life Raft Group Back to members Organisation Profile The Life Raft Group (LRG) is a non-profit organization providing support, through information, education, and innovative research to patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor). Since we received our non-profit status in June 2002, we have expanded our outreach efforts to…
Read MoreJoin the SPAGN Editorial Blog Team: Volunteer Job Opportunity
Volunteer Opportunity: Editors for SPAGN Blog – Voices of Sarcoma Are you passionate about storytelling and making an impact in the sarcoma community? Join SPAGN’s Editorial Team and help shape our global blog, Voices of Sarcoma—and have fun doing it! SPAGN (Sarcoma Patient Advocacy Global Network) unites over 65 advocacy groups across five continents, amplifying…
Read MoreBulgaria: Sarcomafree Foundation
Bulgaria: Sarcomafree Foundation Back to members Organisation Profile The Sarcomafree Foundation is dedicated to raising worldwide awareness about sarcoma and providing essential funding for research and treatment on a global scale. Their primary aim is to support clinical research projects specifically tailored to address the unique needs of young adults and children battling this disease.…
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.
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