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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

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

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

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

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

Today, we're proud to join our member organization, the Spence Family Synovial Sarcoma Foundation, in recognizing Synovial Sarcoma Awareness Day. 🧵 #SynovialSarcomaAwarenessDay #SarcomaAwarenessMonth

Cover image for a five-slide National Synovial Sarcoma Day awareness carousel. The pale yellow graphic announces National Synovial Sarcoma Day on July 17, 2026. Text explains that the day raises awareness, honors patients and families, and advocates for more research and better treatments for synovial sarcoma. Logos for National Synovial Sarcoma Day, the campaign theme "Research Changes Rare," the Spence Family Synovial Sarcoma Foundation, and the Sarcoma Patient Advocacy Global Network appear at the bottom. A callout reads, "Join Us in Spreading Awareness."

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 16/07/2026

Three women. Three different countries. Three different sarcomas. Yet all three describe something many people affected by sarcoma understand: the challenge of finding someone who truly gets it. Community matters. And no one should have to face sarcoma alone. #SarcomaAwarenessMonth

Quote graphic featuring Karin Arndt, a clear cell sarcoma survivor. She stands against a yellow background holding a sign reading "You are NOT alone." The quote discusses the challenge of finding others who shared her experience with a rare and aggressive sarcoma.

Quote graphic featuring Sarah Hunt, a myxoid liposarcoma patient. Against a blue background, she holds a sign reading "You are NOT alone." The quote describes feeling different and struggling to find people who understood what she was going through despite being surrounded by others with cancer.

Quote graphic featuring Maria Jenström, an ultra-rare sarcoma patient. Standing against a yellow background and holding a sign reading "You are NOT alone," she discusses the difficulty of finding answers and information when living with an extremely rare diagnosis.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 16/07/2026

Georgia Garafalo of Desmóide Brasil describes the challenges she faced in her journey as a sarcoma patient.

Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 15/07/2026

Today is Leiomyosarcoma (LMS) Awareness Day. Like all sarcomas, LMS is a rare cancer. Today we recognize the patients, families, caregivers, advocates, researchers, and healthcare professionals working to improve awareness and outcomes for everyone affected by LMS.

Graphic for Leiomyosarcoma (LMS) Awareness Day featuring a purple awareness ribbon on a light gray background. The text reads: “July 15th is LMS Awareness Day.” Additional text explains that leiomyosarcoma originates from smooth muscle cells and is commonly found in the uterus, retroperitoneum, and blood vessel walls. SPAGN branding and Sarcoma Awareness Month branding appear at the bottom of the graphic.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 14/07/2026

The answer is... . . . About 20%! Sarcoma isn't one disease. There are more than 100 recognized subtypes, and around 20% are considered ultra-rare. Every subtype, every patient, and every family deserves to be seen. Did you know the answer before you looked?

Comic-style quiz graphic with the headline “Pop Quiz.” The question asks: “What proportion of sarcomas are considered ultra rare?” Four answer choices are shown: A) About 1%, B) About 5%, C) About 20%, and D) About 80%. A cartoon brain character holding a book appears beside the answers. SPAGN branding and Sarcoma Awareness Month branding appear on the graphic.

Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 13/07/2026

Today is GIST Awareness Day. GIST is the most common sarcoma subtype, but its symptoms often look very different from what people expect. Recognizing these differences can help people reach the right diagnosis sooner. #GISTAwarenessDay #SarcomaAwarenessMonth

Graphic for GIST Awareness Day featuring a purple awareness ribbon on a light gray background. The text reads: “July 13th is GIST Awareness Day.” Additional text explains that GIST symptoms often look different from other sarcomas and notes that fatigue, bleeding, nausea, and bowel or bladder problems were commonly reported in SPAGN's global survey. SPAGN branding and the Sarcoma Awareness Month hashtag appear at the bottom.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 12/07/2026

Today is PEComa Awareness Day. PEComas are ultra-rare, even among rare cancers. When only a small number of people are diagnosed each year, building awareness, research, expertise, and community becomes its own challenge. Today we shine a light on this ultra-rare sarcoma.

Graphic for PEComa Awareness Day 2026 featuring sunflower illustrations and SPAGN branding. The text reads: “PEComa Awareness Day, July 12, 2026.” Additional text explains that PEComas are very rare, with fewer than 1 in 1 million people diagnosed each year and accounting for less than 2% of all sarcomas. The graphic highlights the rarity of PEComa and encourages awareness of this sarcoma subtype.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 11/07/2026

Jayne Bressington of PAWS GIST (Paediatric Adolescent Wild-type & Syndromic GIST) shares her family's journey with sarcoma.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 11/07/2026

Jayne Bressington of PAWS GIST (Paediatric Adolescent Wild-type & Syndromic GIST) shares her family's journey with sarcoma.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 11/07/2026

Jayne Bressington of PAWS GIST (Paediatric Adolescent Wild-type & Syndromic GIST) shares her family's journey with sarcoma.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 11/07/2026

Jayne Bressington of PAWS GIST (Paediatric Adolescent Wild-type & Syndromic GIST) shares her family's journey with sarcoma.

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Sarcoma Patient Advocacy Global Network (SPAGN) @sarcomapatients.bsky.social · 10/07/2026

When Jayne Bressington's daughter was diagnosed with an ultra-rare form of GIST at age 15, they were told there were no treatments, no cure, and no research. A devastating message for any family. As Jayne recalls, they cried as they left the appointment. Then they made a decision. 1/2

Photo quote graphic featuring Jayne Bressington standing against a blue background and holding a sign that reads “You are NOT alone.” The quote reads: “We were told by the top doctors that there were no treatments, there was no cure, and nobody was doing any research. We decided to pretend that that conversation never happened. And then we went looking for answers.” Additional text notes that Jayne's daughter was diagnosed at age 15. SPAGN branding appears on the graphic.

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