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Join our next Knowledge Spot Webinar – November 21st, 2023
Open clinical studies in soft tissue sarcomas, GIST and bone sarcomas Speakers: Nathalie Gaspar, France & Robin Jones, UK For rare cancers as sarcomas, clinical trials are an important part of the treatment concept, as standard therapies are often limited. They might be able provide an improved care for current patients, but they will certainly help…
Read MoreHow to Successfully Engage Policymakers for Sarcoma Patients
In this post, we focus on one specific aspect where Sarcoma UK has really set a standard: How to advocate for changes at the policy level. Richard Davidson, Chief Executive of Sarcoma UK, shares his insights into policy and public affairs work in a talk with SPAGN Volunteer Gabi Ott. What started off as a patient-led information hub for sarcoma patients, is today an influential charity. On 25 September 2023, the Cancer Research Day, Sarcoma UK hosted a reception in Downing Street alongside Chancellor of the Exchequer Rt Hon Jeremy Hunt MP. Other special guests included celebrity ambassadors like ambassadors TommyInnit and DJ Graeme Park.
Read MoreI 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.
Read MoreYour 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…
Read MoreCheck It Out!
Sarcoma patient and patient advocate Roger Wilson shares his experience of finding a lump – what happened and what he learned.
Read MorePatient 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 –…
Read MoreQuality 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…
Read MoreTNG462 in MTAP-deleted Solid Tumors including sarcomas
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 sarcomas WHO is the trial for? Patients of 18 years or older Patients must have a diagnosis of a locally advanced, metastatic, and/or…
Read MoreAbemaciclib (LY2835219) in Ewing’s Sarcoma: CAMPFIRE
Trial name: CAMPFIRE: Abemaciclib (LY2835219) in Ewing’s Sarcoma Agents: Abemaciclib (LY2835219) Phase II Status Active, but not 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…
Read MoreRead 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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