Sarcoma Patient Advocacy Global Network (SPAGN)

@sarcomapatients.bsky.social

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

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.

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.

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.

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.

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.

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

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.

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

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

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.

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.

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.

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."

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."

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."

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."

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.

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.

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.

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.

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.

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.

Comic-style quiz graphic with the headline “Pop Quiz.” The question asks: “Sarcoma symptoms are often mistaken for sports injuries, growing pains, cysts, or other benign conditions.” Two answer choices are shown: A) True and B) False. A cartoon brain character appears in the corner looking puzzled. SPAGN branding appears on the graphic.

Collage promoting Wear Yellow Wednesday on July 8. The largest photo shows a smiling woman in a white-and-yellow striped shirt standing against a yellow wall while bright yellow sunflowers appear to fall around her. Along the right side, a blue graphic reads "Wear Yellow Wednesday, Wed Jul 8th," above a portrait of a woman wearing a yellow top and cardigan. Along the bottom are two additional photos: one of a woman wearing a yellow shirt with a sunflower pin, and another of a woman in sunglasses wearing a bright yellow scarf with the U.S. Capitol in the background.

Photo quote graphic featuring Ines Aulló Pérez, a desmoid tumor patient, standing against a yellow background and holding a sign that reads “You are NOT alone.” The quote reads: “I felt like a hypochondriac. They thought that I was just making it up.” Additional text notes that she waited two years for a diagnosis. SPAGN branding appears on the graphic.