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Dear SPAGN Members and Friends,

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 below to learn what the SPAGN team has been up to!

All the best from the
SPAGN Board of Directors & Team
SPAGN Annual Conference 2023
"I think this conference is special. It is the only sarcoma-dedicated patient-focused conference that has a worldwide reach."
SPAGN Honorary President Roger Wilson on the SPAGN Annual Conference

Each year SPAGN hosts an international gathering of sarcoma patients, patient advocates, and experts to learn about medical topics and capacity building. With an interesting mix of different session formats ranging from presentations, to market place sessions to panel discussions, each year the SPAGN conference offers a wealth of information and inspiration - not to mention a uniquely valuable networking opportunity!

In 2023, for the first time ever, sarcoma patient advocates met face-to-face as a global network from 11-13 May 2023 in Dublin at the SPAGN 13th annual conference, Ireland, after having formalized the transition from a European to a global entity in 2022.
Now with about 60 member organizations, nearly 80 participants attended the 2023 SPAGN conference, with some traveling from as far as India, Japan, South Africa, and the United States of America.

Our report

 

All recordings

 

Video recap

 
More information on our website!
New Horizons GIST 2023
NEW HORIZONS GIST is the most important global annual conference for GIST patient advocates. At NEW HORIZONS GIST, patients from the global GIST patient community come together, can interact with top GIST experts, have access to state‐of‐the‐art medical and scientific information and can exchange best practice in patient advocacy among each other. The conference is a balanced symbiosis of medical content, advocacy topics and capacity building sessions. After more than 2 years living under the restrictions of the pandemic, we held the NEW HORIZONS GIST conference as a hybrid meeting in Dublin, Ireland - for the first time in conjunction with the SPAGN Annual Conference.

Read our report here

 
 

Watch recordings here

 
 
Sarcoma Awareness Month & Blog "Voices of Sarcoma"

Sarcoma Awareness Month 2023: Celebrating our global impact


SPAGN marks Sarcoma Awareness Month by celebrating the impact of our global partnerships with a series of blogs and posts. Each week of July we are sharing new content highlighting our work and the efforts of our 60+ member groups to share reliable information, facilitate collaboration, drive patient priorities in research, and overcome challenges in sarcoma care around the world.

Be sure to follow SPAGN on Twitter, Facebook, Instagram and LinkedIn, and check out our latest blog posts to learn more!
Read our latest from "Voices of Sarcoma"
Knowledge Spots: Next webinars in October and November

Listen, learn, ask, discuss!

The SPAGN Knowledge Spot webinars are a source of highly accessible information for well-informed, knowledgeable non-specialists - such as SPAGN's national patient advocacy groups.

You are invited to join us to listen, learn, ask and discuss with us on the following topics:

Understanding Health Technology Assessment
Speaker: Karen Facey, HTAi, UK
October 4, 2023, 5pm CET / 11am ET
Register here.

Open clinical studies in soft tissue sarcomas, GIST and bone sarcomas
Speakers: Nathalie Gaspar, France & Robin Jones, UK
November 21, 2023, 5pm CET / 11am ET
Register here.

Photo: Andrew Neel - Unsplash
More information & registration here!
Our surveys: Make your voice heard!

Global Sarcoma Patient Research Priorities Survey - closing soon!


⏰️ DEADLINE JULY 31ST:
Our global Sarcoma Patient Research Priorities Survey closes at the end of the month! 

Your responses will help us influence sarcoma research to make it more in line with the needs and experiences of patients by identifying the biggest challenges for sarcoma patients in their care.

This survey is available in 12 languages and is open to:
- people currently living with sarcoma (any type)
- sarcoma survivors or people who once had sarcoma
- caregivers or family members of people with sarcoma
- bereaved caregivers or family members of someone who had sarcoma
- sarcoma patient advocates

Make your voice heard now!
 
Take the global patient research priorities survey now!

First ever global survey on bone sarcomas!

The patients and parents group in the FOSTER (Fight OSteosarcoma Through European Research) consortium are undertaking the first ever global survey for bone sarcoma patients. We want to know what your experiences have been and where your priorities lie in terms of the research agenda.

This survey is open to all bone sarcoma patients or survivors (regardless of type), to all carers of bone sarcoma patients and to patient representatives in the field of bone sarcomas. No matter where you live on the globe we would like to hear from and about you!

This survey will help us to identify where the disparities lie, shine a light on differences between bone sarcoma sub-types and variations across ages.
 
Take the bone sarcoma survey now!
CTOS 2023

Patient Advocacy Lounge @CTOS 2023

We are more than happy to be able to host the "Patient Advcoacy Lounge" at the Annual Meeting of the Connective Tissue Oncology Society (CTOS) again this year. And we would like you to be an active part in it!

Want to learn more? Watch out for our special newsletter, to come soon!

CTOS 2023 - Information & registration
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Sarcoma Patient Advocacy Global Network e.V./Assoc., 
Untergasse 36,
61200 Wölfersheim/Germany
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