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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
Your priorities in sarcoma research – make your voice heard!

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
 
Take the Survey!
New Communications Director at SPAGN

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.”
 
Meet the SPAGN team
CTOS Webinar on ASPS
 
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.
 
Learn more
Blog "Voices of Sarcoma"

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

 
Visit Our Blog
Publications to check out

Defining the role of real-world data in cancer clinical research: The position of the European Organization for Research and Treatment of Cancer
European Journal of Cancer 186 (2023), 52-61
Co-authored by Roger Wilson, Honorary President of SPAGN

Drug evidence watch: a process to the benefit of public health
Comment in The Lancet, April 12, 2023

Photo: Patrick Tomasso on Unsplash

 
SPAGN Annual Conference & New Horizons GIST 2023

SPAGN Annual Conference

May 11-13, 2023 in Dublin/Ireland

 

NEW HORIZONS GIST

May 13-14, 2023 in Dublin/Ireland
 

Find out more about the SPAGN Annual Conference 2023 and New Horizons GIST .
Any questions? Please contact us at email info@sarcoma-patients.org

Upcoming events
 
  • 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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