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Sarcoma Patient Advocacy Global Network (SPAGN)

@sarcomapatients.bsky.social

36 followers 15 following 168 posts

A global network of Sarcoma patient advocacy groups, working together, making a difference! Learn more at www.sarcoma-patients.org.

Posts Replies Media

Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 31/07/2026

THANK YOU! Throughout July, our global sarcoma community shared knowledge, elevated patient voices, and reached people across six continents in dozens of languages. Thank you to our nearly 80 member groups and all who stood with us during Sarcoma Awareness Month. We are stronger together. 💛

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 31/07/2026

What does it mean to be a part of the SPAGN community? Our co-chair Denise Reinke discusses.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 31/07/2026

Karin Arndt of Deutsche Sarkom-Stiftung John and Elly Showler of the The Edward Showler Foundation Lennie Woods of Clear Cell Sarcoma Foundation 3 families, 3 different countries, each impacted by clear cell sarcoma in different ways, speak about the surprising commonalities of their experience.

Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 31/07/2026

Philip Leider of the Sarcoma Alliance talks about the challenges of carrying on his sister's legacy.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 30/07/2026

Joe McNeal represents the oldest sarcoma foundation in the world. Listen to her thoughts on the long-standing challenges of sarcoma.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 30/07/2026

Throughout Sarcoma Awareness Month, we've celebrated the voices of people living with sarcoma around the world. That is strengthened when industry chooses to listen, engage with patient advocates, and work alongside the community. Thank you to our valued partners for supporting that vision.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 30/07/2026

Catch the full episode on YouTube here: www.youtube.com/watch?v=RVIJ...

SARC Talk Episode 41 - Kathrin Schuster - SPAGN

In this episode of SARC Talk, our guest is Kathrin Schuster, Executive Director of the Sarcoma Patient Advocacy Global Network (SPAGN), to discuss the 2026 Sarcoma Awareness Month theme: "The…

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 30/07/2026

As we approach the end of #SarcomaAwarenessMonth2026, our thanks to SARC for welcoming our Executive Director Kathrin Schuster on to the recent episode of SARC Talk. We always appreciate these opportunities for thoughtful engagement with our advocacy partners. Link to the full episode below!

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 30/07/2026

Catch the full episode on YouTube here: www.youtube.com/watch?v=RVIJ...

SARC Talk Episode 41 - Kathrin Schuster - SPAGN

In this episode of SARC Talk, our guest is Kathrin Schuster, Executive Director of the Sarcoma Patient Advocacy Global Network (SPAGN), to discuss the 2026 Sarcoma Awareness Month theme: "The…

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 30/07/2026

As we approach the end of #SarcomaAwarenessMonth2026, our thanks to SARC for welcoming our Executive Director Kathrin Schuster on to the recent episode of SARC Talk. We always appreciate these opportunities for thoughtful engagement with our advocacy partners. Link to the full episode below!

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 29/07/2026

One of the most inspiring parts of #SarcomaAwarenessMonth was our member organizations created across our shared global advocacy campaign. Thank you to every SPAGN member who made this campaign truly global. 💛🌍

A collage showcasing posts shared by SPAGN member organizations during Sarcoma Awareness Month 2026. The grid features campaign graphics, awareness messages, patient stories, educational infographics, Wear Yellow Wednesday photos, videos, and posts translated into multiple languages. The collection highlights participation from sarcoma organizations around the world, demonstrating a coordinated global awareness campaign.

A second collage of social media posts from SPAGN member organizations participating in Sarcoma Awareness Month 2026. The images include multilingual awareness graphics, community photos, educational resources, campaign artwork, personal stories, and advocacy messages shared across different countries and platforms, illustrating the global reach of the campaign.

A close-up screenshot of a social media comment from Sarcoma Cancer Ireland thanking the Sarcoma Patient Advocacy Global Network for creating a global community that connects sarcoma patient advocacy groups. The message says it helps to know they are not alone on the journey and includes heart, sunflower, and globe emojis.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 29/07/2026

Lidiya Vitanova, who lost her son to osteosarcoma, of Together Fighting Sarcoma, speaks about how her family responded to the challenges of sarcoma with advocacy.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 29/07/2026

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 29/07/2026

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 29/07/2026

Lidiya Vitanova, who lost her son to osteosarcoma, of Together Fighting Sarcoma, speaks about how her family responded to the challenges of sarcoma with advocacy.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 29/07/2026

Lidiya Vitanova, who lost her son to osteosarcoma, of Together Fighting Sarcoma, speaks about how her family responded to the challenges of sarcoma with advocacy.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 29/07/2026

Lidiya Vitanova, who lost her son to osteosarcoma, of Together Fighting Sarcoma, speaks about how her family responded to the challenges of sarcoma with advocacy.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 29/07/2026

Lidiya Vitanova, who lost her son to osteosarcoma, of Together Fighting Sarcoma, speaks about how her family responded to the challenges of sarcoma with advocacy.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 28/07/2026

Sami Sandakly of Info Sarcomes reflects on his experience as an adolescent sarcoma patient.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 28/07/2026

Survivorship can bring long-term physical and emotional challenges that continue long after active treatment ends. As Synovial Sarcoma survivor Julie Kramer shares one of the most valuable forms of support was connecting with someone who had lived through a similar experience. #SarcomaAwarenessMonth

Photo of Synovial Sarcoma survivor Julie Kramer holding a sign reading “You are NOT alone.” The graphic features a quote about how people often assume life returns to normal after treatment ends, when in reality survivorship brings ongoing emotional and physical challenges. Julie explains that connecting with someone who had gone through a similar experience provided support she did not know she needed and helped validate the emotions that come with a sarcoma diagnosis.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 27/07/2026

Georgia and Wilker of Brasil's Associação Brasileira do Tumor Desmoide, and volunteers with the Sarcomunicándonos Latin América initiative express their thanks to SPAGN and all the member groups for the support they have received advocating for sarcoma patients in Latin America.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 27/07/2026

Today we're celebrating the nearly 80 patient advocacy organizations that make up SPAGN, working together across borders to support patients, families, caregivers, and survivors. Learn more about our global community: bit.ly/SPAGNmembers #SarcomaAwarenessMonth #YouAreNotAlone

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 26/07/2026

Some of our videos are too long for platforms like BlueSky or X. You can catch ALL the videos in our #SarcomaAwarenessMonth2026 series on the SPAGN YouTube page here: www.youtube.com/playlist?lis...

Challenges of Sarcoma

2026 Global Sarcoma Awareness Campaign

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 26/07/2026

Julie Kramer of the Synovial Sarcoma Foundation shares the challenges she faced as a young stage 4 Synovial Sarcoma Patient. www.youtube.com/watch?v=wFWd...

Sarcoma Challenges: The lack of aftercare and support

Julie talks about her experience having synovial sarcoma as a young adult, and the challenges of not having enough support after her active treatment ended.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 25/07/2026

Fritz, a Swiss GIST patient, shares his thoughts about the challenges he faced after being diagnosed with sarcoma.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 25/07/2026

Wilker Franco of Brazil speaks about his experience as both a sarcoma patient and an oncology pharmacist.

Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 25/07/2026

Every statistic begins with someone's experience. Our latest YouTube discussion takes a closer look at the published findings from SPAGN's Global Sarcoma Diagnosis Pathway Survey and the questions they raise for the future of sarcoma care. Listen here: www.youtube.com/watch?v=lKKm...

Deep Dive: Why Medical Systems Delay Sarcoma Diagnosis

This podcast examined findings from SPAGN’s global survey on diagnostic delays in sarcoma, drawing on responses from patients and caregivers worldwide. The discussion highlighted the impact of…

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 24/07/2026

Tonight we Light Up for Sarcoma. Turn your lights yellow, share your photos, and help us make sarcoma visible around the world. Together with our friends at @curesarcoma.bsky.social, we're building a global tradition to show everyone affected by sarcoma: You are not alone. #SarcomaAwarenessMonth

Collage graphic for Light Up for Sarcoma. Images show landmarks and spaces illuminated with yellow lights, including a Ferris wheel, tower, domed building, and outdoor seating area. Text reads: “Light Up for Sarcoma” and “Tonight. Post your photos of local landmarks, homes, and spaces lit up with yellow lights to show everyone struggling with sarcoma you are not alone.” The graphic notes the partnership with the Sarcoma Foundation of America and includes SFA and SPAGN logos.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 23/07/2026

Many people have never heard of sarcoma until it becomes part of their lives. The first challenge is often simply understanding what it is, where to find reliable information, and how to navigate a healthcare systems. Joost's story reminds us why patient-focused information and support matter.

Photo of Joost Groen, a GIST patient, standing against a yellow background and holding a sign that reads "You are NOT alone." His quote describes the confusion he felt after diagnosis, explaining that he did not know what sarcoma, GIST, or specialist centers were, and that finding information suitable for patients made a significant difference in helping him understand his disease and navigate care.

Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 22/07/2026

Roger Wilson, SPAGN's honorary president, speaks about the challenges of sarcoma research.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 22/07/2026

One of the biggest challenges after a sarcoma diagnosis is where to find trustworthy information. SPAGN's Study Directory helps patients, caregivers, and families discover studies and research opportunities from around the world. www.sarcoma-patients.org/study-direct... #SarcomaAwarenessMonth

sarcoma-patients.org

Study Directory - SPAGN - Sarcoma Patient Advocacy Global Network

Taking part in a clinical trial can be a good choice but it is often hard to find a clinical trial that is right for you. Many patient organizations and websites maintain lists of clinical trials.…

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 21/07/2026

Research doesn't move forward on breakthroughs alone. It moves forward because patients and families choose to be part of something bigger than themselves. ICYMI, catch our latest blog for more: bit.ly/SPAGNblog_AI...

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 21/07/2026

Kai Pilgerman of both SPAGN and Deutsche Sarkom-Stiftung talks about the importance of accessing the right expert for your specific sarcoma.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 21/07/2026

Where you are treated should not determine the quality of care you receive. Our SISN paper calls for global standards to identify, support, and connect specialist sarcoma centers around the world. Learn more through the SISN paper at bit.ly/SISNpaper or on SPAGN's website. #SarcomaAwarenessMonth

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 20/07/2026

Prof. Dr. Robin Jones of The Royal Marsden NHS shares his perspective on the challenges of sarcoma as a medical oncologist.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 20/07/2026

Every person with sarcoma should have the same opportunity to participate in research, regardless of where they live. Because better access doesn't just improve today's care. It helps create tomorrow's treatments. #SarcomaAwarenessMonth

Slide 6 notes that equitable access to research participation remains an unmet need globally and that addressing disparities is critical to improving outcomes in sarcoma care.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 20/07/2026

No single hospital. No single country. No single organization. Progress in sarcoma depends on working together across borders and sharing knowledge, patients, and data.

Slide 5 emphasizes that international collaboration is essential because no single country can generate enough patients or data for many sarcoma subtypes.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 20/07/2026

Getting to the right specialist isn't only about better care. It can also determine whether someone ever learns about a clinical trial or innovative treatment that could change their future.

Slide 4 states that treatment at specialist sarcoma or reference centers is one of the strongest predictors of access to clinical trials and innovative therapies.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 20/07/2026

Rare cancers face a challenge most common cancers never do. When patients are spread across countries and across many different subtypes, advancing research becomes much harder. That's why collaboration matters.

Slide 3 highlights that the rarity and heterogeneity of sarcomas create major barriers to clinical trial participation because patient populations are small and dispersed.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 20/07/2026

When access to research depends on where you live or who treats you, opportunity isn't being shared equally. That's a challenge we can solve, but only if we recognize it first.

Slide 2 explains that access to sarcoma research remains structurally unequal due to geographic concentration of expertise, limited referral pathways, and fragmented care systems.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 20/07/2026

What keeps people with sarcoma from accessing research? This week we're looking at some of the barriers that continue to limit access to clinical trials, specialist care, and research around the world. 🧵 Thanks to ESMO for the research and data that informed this series. #SarcomaAwarenessMonth

Six-slide infographic carousel titled "5 Stunning Sarcoma Facts You May Not Know," based on an ESMO Sarcomas and Rare Cancers Congress publication from March 20, 2025.

Slide 1 introduces the topic and notes that real-world data has become integral to sarcoma research.

Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 19/07/2026

SPAGN Board Co-Chair and devoted patient advocate, Denise Reinke shares her thoughts on the challenges of sarcoma.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 19/07/2026

The answer is: . . . . B. There are too few people with each subtype to run large studies. Many ultra-rare sarcomas affect so few people that researchers may need to collaborate across countries just to gather enough data for meaningful research. That's why international collaboration is key.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 17/07/2026

One week from today, we'll join our partners at the Sarcoma Foundation of America for Light Up for Sarcoma. Who will you ask to Light Up for Sarcoma on July 24th? #SarcomaAwarenessMonth #LightUpForSarcoma

Collage graphic promoting Light Up for Sarcoma on July 24th. Images show illuminated landmarks and decorative yellow lighting, including a Ferris wheel, city landmarks, and a warmly lit outdoor gathering space. Text encourages supporters to ask local landmarks to light up yellow or illuminate their own homes to raise awareness for sarcoma. Logos for the Sarcoma Foundation of America and Sarcoma Patient Advocacy Global Network appear at the bottom.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 17/07/2026

Rashi Kapoor of Sachin Sarcoma Society shares her journey and the challenges sarcoma patients face in India.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 17/07/2026

Sometimes it starts with one patient deciding their story is worth sharing. Julie Kramer reflects on what she learned from living with synovial sarcoma, and why every patient matters. Read the latest Voices of Sarcoma: bit.ly/SPAGNblog_AI... #SynovialSarcomaAwarenessDay #ResearchChangesRare

Every patient matters: Building the future of synovial sarcoma research - SPAGN - Sarcoma Patient Advocacy Global Network

This year’s winner of the first prize of SPAGN’s Advocacy in Action Awards is the Synovial Sarcoma Foundation based in the US. With a mission to advance research into this rare and aggressive cancer,…

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 17/07/2026

Had you heard of synovial sarcoma before today? Let us know below, then help us spread awareness by sharing this thread. #SynovialSarcomaAwarenessDay #ResearchChangesRare

Closing awareness graphic titled "Help Us Spread Awareness." The slide encourages people to tag friends, organizations, and advocates, and to use campaign hashtags including National Synovial Sarcoma Day, Sarcoma Awareness Month, and Research Changes Rare when sharing. A final callout encourages viewers to share the post to help accelerate research for synovial sarcoma.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 17/07/2026

Around the world, patient organizations work together because no one organization can tackle rare cancers alone. When we share knowledge and amplify one another's voices, everyone benefits.

Awareness graphic titled "Behind Every Diagnosis is a Story." A collage of photographs features people living with synovial sarcoma alongside family members and advocates. Text honors patients, survivors, caregivers, loved ones, physicians, researchers, and advocates working toward better outcomes. A callout reads, "No One Fights Synovial Sarcoma Alone."

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 17/07/2026

Rare cancers deserve visibility, research, and investment. Awareness is where progress begins. Research changes rare.

Educational graphic titled "Why Awareness Matters." The slide explains that synovial sarcoma accounts for only about 5 to 10 percent of all soft tissue sarcomas, many patients experience recurrence or metastatic disease, rare cancers often receive less funding and fewer treatment options, and research participation is essential for progress. A highlighted message reads, "Awareness Leads to Advocacy. Advocacy Leads to Progress."

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 17/07/2026

Many people have never heard of synovial sarcoma until it affects someone they love. Today is about changing that.

Educational graphic titled "What is Synovial Sarcoma?" The slide explains that synovial sarcoma is a rare and aggressive soft tissue cancer that often affects teenagers and young adults, can occur anywhere in the body, and is frequently misdiagnosed or diagnosed late. A callout reads, "Rare Cancers Deserve Awareness Too."

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