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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.
Read MoreINBRX-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)…
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…
Read MoreÉrintettek 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…
Read MoreOur 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,…
Read MoreHow the Pandemic Produced a Sustainable Resource for Sarcoma Patients in India
Sachin Sarcoma Society, a SPAGN Member Group based in India, shares a guest blog about building support networks and overcoming the challenges of the COVID-19 pandemic.
Read MoreYour 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…
Read MorePortrait of a Patient Advocate: Kai Pilgermann
Would you like to know more about what sarcoma advocates around the world are doing and working on?
We at Voices of Sarcoma want to introduce you to the advocates from our member groups.
Recently, we interviewed Kai Pilgermann from the German Sarcoma Foundation.
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