I Lost My Son and Found My Purpose

We spoke with the founder of the first sarcoma organization in Bulgaria, Lidiya Vitanova, who lost her young son, Niki, to sarcoma. Lidiya talked to us about the sarcoma situation in her country as well as her motivation and goals for improving the outcomes of people diagnosed with sarcoma and other rare diseases.

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Your poster @CTOS 2023

Show Off Your Advocacy Work at CTOS 2023, to the broadest international community of sarcoma experts: Create and Submit a Poster! Sarcoma patient advocacy organizations are cordially invited to participate in SPAGN’s poster presentation session that will be held at this year’s CTOS conference. This session is an opportunity for you to showcase your organization…

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Check It Out!

Sarcoma patient and patient advocate Roger Wilson shares his experience of finding a lump – what happened and what he learned.

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Patient Advocacy @CTOS 2023

  It is our great pleasure to announce that patient advocacy will once again have a well-earned place at the Connective Tissue Oncology Society (CTOS) Annual Meeting. We will be hosting the Patient Advocacy Lounge at CTOS 2023 in Dublin: Patient Advocacy Lounge Liffey Hall 2, Convention Centre Dublin Open from Thursday, November 2 –…

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Quality of life in sarcomas?

Incorporating the patient voice in sarcoma research: How can we assess quality of life of sarcoma patients? Soft tissue and bone sarcoma patients form a diverse and rare patient group. Quality of life questionnaires used in research and clinical practice are not always complete and relevant for the unique experiences of this patient group. Take…

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TNG462 in MTAP-deleted Solid Tumors including MPNST

  Agents: TNG462 Phase I/II Status Recruiting Sponsor Tango Therapeutics   Further information on Clinicaltrials.gov.   Phase I/II study in solid tumor patients with a specific genetic mutation, a MTAP deletion, including malignant peripheral nerve sheath tumors (MPNST) WHO is the trial for? Patients of 18 years or older Patients must have a diagnosis of…

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Abemaciclib (LY2835219) in Ewing’s Sarcoma: CAMPFIRE

  Trial name: CAMPFIRE: Abemaciclib (LY2835219) in Ewing’s Sarcoma Agents: Abemaciclib (LY2835219) Phase II Status Recruiting Sponsor Eli Lilly and Company   This is a Phase II study that aims to measure the benefit of adding abemaciclib to chemotherapy (irinotecan and temozolamide) for Ewing’s sarcoma that has come back or did not respond to treatment.…

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Read the latest in our SPAGN Newsletter!

  The last few months have been filled with activities, from the SPAGN Annual Conference and New Horizons GIST to our surveys and now Sarcoma Awareness Month in July. And there’s more to come. Read on here in our latest newsletter (July 2023) to learn what the SPAGN team has been up to . Want to…

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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.

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Facilitating Collaboration in Sarcoma Care

A photo of Prof. Dr. Bernd Kasper standing on a red bridge which is out of focus.

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.

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