Posts Tagged ‘patient advocacy’
Abbieâs Determination to Sock it to Sarcoma!
Mandy Basson is a mother on a mission. Her daughter Abbieâs diagnosis of Ewingâs 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 â 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 âheartbeatâ 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 âCancersâ 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 MoreMy lumpy life as a young adult
âAfter a shower, I noticed an odd lump on my left hip. Two weeks passed, but Lumpyâthe name I declared this mysterious lumpâremained. Luckily, I had a when in doubt, check it out mentalityâŠâ Read about Mattâs 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 entĂŁo, a Desmoide Brasil tem â entre outras iniciativas — organizado simpĂłsios, montado exposiçÔes, 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 histĂłria Ă© 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 â 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!
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