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Why and How should I support SPAGN? Global networking is essential for progress in sarcoma care
The sadness about the death of her 34-year-old sister Paola and the frustration about the few options available for sarcoma patients, instilled – 17 years ago – the wish in Ornella Gonzato to do something to make sarcoma patients less ‘invisible’. In the wake of the forthcoming SPAGN annual conference, the longstanding Board member calls upon patients and patient advocates in getting active to support the global network for sarcoma patients. From her own experience she can tell why it makes a difference to others and oneself and gives tips about how to get started.
Read MoreSweden: Barncancerfonden – The Swedish Childhood Cancer Fund
Sweden: Barncancerfonden – The Swedish Childhood Cancer Fund Back to members Organisation Profile The Swedish Childhood Cancer Fund is dedicated to ensuring every child with cancer survives and lives a good life. They fund research aimed to develop more effective and milder treatments that are tough on cancer but gentle on children. Additionally,…
Read MoreSome metaphors that matter – Are we rare? Are we warriors?
The use of metaphors is closely connected with cancer: We turn to them because literalness is sometimes terrifying. And because, within the comfort zone of language, we can save (or condemn) ourselves. Natalia Fernández, researcher into language of sarcoma patients, analyses why we resort to metaphors and pleads for humanizing our language.
Read MoreUSA: The EHE Foundation
USA: The EHE Foundation Back to members Organisation Profile The EHE Foundation is the leading global nonprofit advocacy and research organization dedicated to finding treatments and a cure for epithelioid hemangioendothelioma (EHE), an ultra-rare vascular cancer. We unite patients, researchers, clinicians, and industry to drive scientific progress, advance research, and improve…
Read MoreUSA: Clear Cell Sarcoma Foundation
USA: Clear Cell Sarcoma Foundation Back to members Organisation Profile Mission statement: The Clear Cell Sarcoma Foundation (formerly Sara’s Cure) is a Charleston, SC based 501(c)(3) with one mission – to make Clear Cell Sarcoma survivable through education and scientific research while ensuring all patients and caregivers impacted have a voice and platform to enact…
Read MoreUSA: Make IT Better Agents – pediatric osteosarcoma nonprofit
USA: Make IT Better Agents – pediatric osteosarcoma nonprofit Back to members Organisation Profile MISSION: MIB Agents is a leading pediatric osteosarcoma nonprofit dedicated to Making It Better for our community of patients, caregivers, doctors, and researchers with the goal of less toxic, more effective treatments and a cure for this aggressive bone cancer.…
Read MoreUSA: GSI – GIST Support International
USA: GSI – GIST Support International Back to members Organisation Profile GIST Support International (GSI) is an all-volunteer group of patients with gastrointestinal stromal tumor (GIST), family members, and interested professionals. Our e-mail listserv includes over 1400 subscribers who form an online community to share information about GIST treatment and to support each other in living with…
Read MoreUSA: Chordoma Foundation
USA: Chordoma Foundation Back to members Organisation Profile Chordoma is a rare cancer that grows in the bones of the skull and spine. It can affect people of all ages and is diagnosed in just one in one million people per year. Chordomas are complicated tumors to treat properly and often regrow after treatment. Currently,…
Read MoreUSA: Chondrosarcoma Foundation
USA: Chondrosarcoma Foundation Back to members Organisation Profile The purpose of CS Foundation is to educate the public about Chondrosarcoma; support and advocate for patients and families that are suffering from this disease, and advocate to improve the treatment and care for these patients. CS Foundation also strives to advocate and promote positive changes…
Read MoreUK: The Boom Foundation
UK: The Boom Foundation Back to members Organisation Profile The Boom Foundation is the only charity in Northern Ireland dedicated to supporting patients suffering from sarcoma cancer. There are over 100 new patients diagnosed with sarcoma each year in NI, many of whom are children. In its first year (April 2013 – April…
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