5 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.

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What 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.

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Three 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.

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INBRX-109 in Conventional Chondrosarcoma (ChonDRAgon)

  Trial name: INBRX-109 in conventional chondrosarcoma Agents: INBRX-109, placebo Phase II Status 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 unresectable (=inoperable)…

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Peak: 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…

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George 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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Érintettek Association

Hungary: Érintettek Association Back to members Organisation Profile Érintettek Association is a non-profit parents’ association, that  primarily wants to provide help to children with cancer, leukemia and those who have recovered and their families. The founders of the association, are all involved, as parents they are raising a child with cancer or a child who has…

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Our latest SPAGN Newsletter is out!

  The sarcoma community is active – there’s lots for you to check out, to join and make your voice heard as well. Read all updates in in the sarcoma world and SPAGN in our latest newsletter (April 2023) here. Learn more about our survey about “Priorities in Sarcoma Resarch”, our new team member Cory,…

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Your priorities in sarcoma research – make your voice heard!

The need for patient involvement in scientific research is curcial as there is a mismatch between what patients, clinicians, and researchers would want to see researched, and what is actually being researched. It is our aim to bridge this mismatch and open up the discussion between patients and clinicians to agree on priorities for future research. Through our Patient-Powered…

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