Blog & News
Key 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…
Save 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…
Detecting sarcomas early is crucial
Diagnosing sarcomas is important but challenging: they are so rare that many doctors come across only a handful during their careers, and early symptoms are often vague. Soft tissue sarcomas being his specialisation, Dr. Avirup Chowdury from the Institute of Cancer Research in London, takes us through the diagnostic pathway and identifies key factors of an ideal scenario. He also give pointers for patients of suspicious symptoms.
Abbie’s Determination to Sock it to Sarcoma!
Mandy Basson is a mother on a mission. Her daughter Abbie’s diagnosis of Ewing’s Sarcoma started a journey to improve diagnosis and treatment pathways for sarcoma patients in rural healthcare systems. This is the story of the birth of Sock it to Sarcoma!
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.
Sarcoma 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…
The 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.
From 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.
What 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…
Six 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!