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When the Patient Becomes the Researcher
Dr. Sydney Stern, biomedical scientist and patient advocate, describes her personal journey as a patient with a rare tumor disease and her quest for answers through science. She calls for patients to get involved in research and outlines options for doing so.
Read MoreFacilitating Collaboration in Sarcoma Care
In this interview, SPAGN Communications Director Cory Archibald speaks with Dr. Bernd Kasper, to learn about the role of patient advocacy groups like SPAGN in strengthening global cooperation to improve patient outcomes.
Read MoreAdvocacy in Action Award 2022: The Winners
Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We want to celebrate and honour outstanding practices, projects, initiatives or campaigns and the creators working behind these activities with the SPAGN Advcoacy in Action Award. We are thrilled with all the…
Read More5 Questions Every Patient Should Ask When Searching for Information about Sarcoma
Getting a sarcoma diagnosis is a life-altering event that brings a wave of emotions and questions. Once the initial shock subsides, many patients turn to the internet in search of information about their disease. Despite the common advice of “Whatever you do, don’t google it!”, seeking information about your disease and its treatment can be empowering. Instead of discouraging patients from seeking information, it’s important to guide them towards reliable sources of information and support them in becoming health literate.
Read MoreWhat Makes Sarcoma so Challenging?
July is Sarcoma Awareness Month. The aim is to promote an understanding of sarcoma, a rare form of cancer that originates in the connective tissues of the body, such as bones, muscles, and nerves. Unfortunately, sarcomas pose major challenges in diagnosis, management, treatment and research. Sarcoma Awareness Month highlights the goals of the sarcoma community in overcoming these challenges.
Read MoreThree Patient Advocacy Award Winners and One Sponsor
Three truly impressive initiatives received this year’s Advocacy in Action Awards of the Sarcoma Patients Advocacy Global Network (SPAGN). With the awards, the organization honors outstanding practices, projects, initiatives or campaigns, and the individuals working behind these activities.
Read the stories of Sandeep Kumar from the DigiSwhastya Foundation; Angelika Sandakly of Info Sarcomes (France); and Alberto Martinez Gutierrez from the Fundación Mari Paz Jimenez Casado (Spain). Last but not least, find out what motivated Ornella Gonzato of the Paola Gonzato-Rete Sarcoma Foundation (Italy) to sponsor the prizes.
Read MoreINBRX-109 in Conventional Chondrosarcoma (ChonDRAgon)
Trial name: INBRX-109 in conventional chondrosarcoma Agents: INBRX-109, placebo Phase II Status Active, not recruiting Sponsor Inhibrx, Inc. This study is a randomized, blinded, placebo-controlled phase 2 study of INBRX-109 in unresectable or metastatic conventional chondrosarcoma patients. Further information can be found on clinicaltrials.gov. WHO is the trial for? Adult patients with…
Read MorePeak: CGT9486+Sunitinib vs. Sunitinib in GIST
Trial name: CGT9486 (Bezuclastinib)+Sunitinib vs. Sunitinib alone in advanced GIST Agents: CGT9486 (Bezuclastinib), Sunitinib Phase III Status Closed for recruitment, but active Sponsor Cogent Biosciences, Inc. This is a Phase 3, open-label, international, multicenter study of CGT9486 in combination with sunitinib in locally advanced, metastatic, and/or unresectable GIST. Further information can be found…
Read MoreAIAA Winners 2022
Advocacy in Action Award 2022 Winners announced Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We believe it is time to shout out about how important patient advocacy in sarcomas is – for patients, caregivers, healthcare professionals or anyone interested in…
Read MoreGeorge Pantziarka TP53 Trust (GPTP53)
UK: George Pantziarka TP53 Trust (GPTP53) Back to members Organisation Profile The George Pantziarka TP53 Trust is the UK’s only charity dedicated to supporting families with Li Fraumeni Syndrome and related conditions. It offers practical support and advice, publishes information for patients and doctors alike and is dedicated to making a difference with research. Where…
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