Posts Tagged ‘rare cancers’
ACF’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 MoreBridging the Gap in Sarcoma Care: A Vision for South Africa
Sarcoma patients in South Africa struggle to find the expertise required for correct diagnosis and appropriate treatment. Lauren Pretorius, Chief Executive Office of Campaigning for Cancer, provides her vision on how sarcoma care in South Africa can be transformed.
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 MoreDetecting 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.
Read MoreAbbie’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!
Read MoreArtificial 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 More