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Dear SPAGN Members and Friends,
The sarcoma community is active - there's lots for you to check out, to join and make your voice heard as well. See below for our latest updates about the sarcoma world and SPAGN.
All the best from the
SPAGN Board of Directors & Team
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| Your priorities in sarcoma research – make your voice heard! |
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Survey open!
The need for patient involvement in scientific research is curcial. It is our aim to open up the discussion between patients and clinicians to agree on priorities for future research. Through our Patient-Powered Research Network (PPRN), we bring together clinicians, patients, and carers to identify and prioritize evidence uncertainties in sarcomas that could be answered by research. Part 1 of our project has been completed and is published here . Part 2 of our survey is now open for you to answer! Please make your voice heard and help shape sarcoma research!
The questionnaire takes 10-15 minutes and is available in 11 languages.
Photo: Uli Deck/ARTIS
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| New Communications Director at SPAGN |
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Welcome, Cory Archibald!
Cory joined SPAGN as new Communications Director in March 2023. She has worked in communications and training for nearly 20 years across multiple industries, in both corporate and non-profit roles. As an American expat who has lived and worked abroad for half her life, she has worked with teams on nearly every continent. She has a deep passion for advocacy and has worked with some of the leading progressive politicians in the United States to advance healthcare policy, including multiple members of Congress. Cory and her husband are also active animal rescuers and have coordinated with animal rescue groups all over the world. “I am thrilled to join the team at SPAGN! Kathrin, Michi, and all our Board members have built a strong foundation with a global reach, and I’m excited to work with everyone to take SPAGN to the next level. Like many people, my family has been impacted by cancer, and I am grateful for the chance to honor the legacy of my loved ones by advocating for better patient care and patient-centered research.”
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This second webinar hosted by CTOS is focussing on Alveolar Soft Part Sarcoma (ASPS). It is our great pleasure to announce that the event will be opened by a presentation from patients' perspective: Dr. Yosef Landesman, father of an ASPS survivor and founder of the patient organization iCureASPS will be speaking on behalf of SPAGN and the patient community. The webinar will take place April 26, 9-11am Eastern Time.
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New blog post: Learn more about 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.
Read more here.
Are you a sarcoma patient or patient advocate and are working on an important topic? We'd love to hear from you! Send us a message on info@sarcoma-patients.org
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| Publications to check out |
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| SPAGN Annual Conference & New Horizons GIST 2023 |
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SPAGN Annual Conference
May 11-13, 2023 in Dublin/Ireland
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NEW HORIZONS GIST
May 13-14, 2023 in Dublin/Ireland
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- ASCO, June 2-5, 2023, Chicago, USA
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Sarcoma Patient Advocacy Global Network e.V./Assoc.,
Untergasse 36,
61200 Wölfersheim/Germany
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Wenn Sie diese E-Mail (an: info@sarcoma-patients.eu) nicht mehr empfangen möchten, können Sie diese hier kostenlos abbestellen. |
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