Living with Raynaud’s or digital ulcers? Come to our virtual, FREE webinar! Join us on February 3 at 9AM PST/12PM EST to kick off #RaynaudsAwarenessMonth with an informational webinar on these common complications of scleroderma. This session will cover: ❓Why Raynaud’s and digital ulcers occur ✋ Common symptoms and warning signs 🔎 How these conditions are screened for & diagnosed 💊 Current treatment & management strategies 🔬 What emerging research means for future care Hear from Tracy Frech,
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Living with Raynaud’s or digital ulcers? Come to our virtual, FREE webinar! Join us on February 3 at 9AM PST/12PM EST to kick off #RaynaudsAwarenessMonth with an informational webinar on these common complications of scleroderma. This session will cover: ❓Why Raynaud’s and digital ulcers occur ✋ Common symptoms and warning signs 🔎 How these conditions are screened for & diagnosed 💊 Current treatment & management strategies 🔬 What emerging research means for future care Hear from Tracy Frech,
128 views3 months ago
TikToksrfcure
Last year's
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Last year's
2.1K viewsMay 26, 2023
TikToksrfcure
✨ Big news about Cool Comedy • Hot Cuisine from event Co-Chair @Kelly Rizzo✨
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✨ Big news about Cool Comedy • Hot Cuisine from event Co-Chair @Kelly Rizzo✨
8.1K viewsOct 3, 2024
TikToksrfcure
Community Support for Scleroderma Awareness and Cure
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Community Support for Scleroderma Awareness and Cure
800 viewsJan 3, 2025
TikToksrfcure
Join the 2024 SRF Research Challenge to support research like Dr. Flynn's! Dr. Ryan Flynn (Harvard University, Boston Children's Hospital) shares information about his SRF-funded research project, Cell Surface GlycoRNAs in Autoimmunity, and how it could help people living with scleroderma. Your support of innovative research like Dr. Flynn's, and other projects funded by the SRF, helps advance our understanding of this disease. By joining this year's Research Challenge, you'll be a part of the n
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Join the 2024 SRF Research Challenge to support research like Dr. Flynn's! Dr. Ryan Flynn (Harvard University, Boston Children's Hospital) shares information about his SRF-funded research project, Cell Surface GlycoRNAs in Autoimmunity, and how it could help people living with scleroderma. Your support of innovative research like Dr. Flynn's, and other projects funded by the SRF, helps advance our understanding of this disease. By joining this year's Research Challenge, you'll be a part of the n
753 viewsJul 9, 2024
TikToksrfcure
Check out this clip from last year's Patient Forum: Falguni D. shares her lifehack for managing calcinosis symptoms! In this video, Falguni shares her practical tips for handling this common and often painful symptom of scleroderma. Watch the full lifehacks video on our YouTube channel: https://bit.ly/4bUewTI And be sure to save the date—this year's Patient Forum, Collaborating for a Cure, is coming soon! Mark your calendars for this free, virtual event returning on June 2, 2025, and stay tuned
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Check out this clip from last year's Patient Forum: Falguni D. shares her lifehack for managing calcinosis symptoms! In this video, Falguni shares her practical tips for handling this common and often painful symptom of scleroderma. Watch the full lifehacks video on our YouTube channel: https://bit.ly/4bUewTI And be sure to save the date—this year's Patient Forum, Collaborating for a Cure, is coming soon! Mark your calendars for this free, virtual event returning on June 2, 2025, and stay tuned
7.4K viewsMar 21, 2025
FacebookScleroderma Research Foundation
A long road to answers: watch Rosa D. (dx 2019) tell her story of navigating her scleroderma diagnosis 🔍 For years, Rosa struggled with alarming symptoms, and like many people living with scleroderma, she was given several misdiagnoses before finally receiving an explanation. Today, Rosa is sharing her experiences to help raise awareness around scleroderma and the challenges that so many people encounter on the path to diagnosis. At the Scleroderma Research Foundation, we are dedicated to advan
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A long road to answers: watch Rosa D. (dx 2019) tell her story of navigating her scleroderma diagnosis 🔍 For years, Rosa struggled with alarming symptoms, and like many people living with scleroderma, she was given several misdiagnoses before finally receiving an explanation. Today, Rosa is sharing her experiences to help raise awareness around scleroderma and the challenges that so many people encounter on the path to diagnosis. At the Scleroderma Research Foundation, we are dedicated to advan
240.9K views1 month ago
TikToksrfcure
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“We couldn’t do this work without you.” - Howard Chang, MD, PhD of Stanford University; SRF-Funded Researcher 2023 has been a year of progress because of people like you. From launching CONQUEST, a groundbreaking platform clinical trial, to funding $2M in research grants, your support has allowed us to remain laser-focused on finding a cure for scleroderma. Like Dr. Chang says, we can't do this without you. With your help, we can continue to accelerate progress towards a cure. Make a gift and ma
1.9K viewsDec 14, 2023
TikToksrfcure
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Can supplements help in managing scleroderma? Dr. Volkmann weighs in at the this year's Patient Forum 🎥 In this clip, Dr. Elizabeth Volkmann shares insights on the use of supplements and how they can fit into the management of scleroderma. Check out the video to hear her perspective and learn what factors to consider when thinking about adding supplements to your care plan. “Collaborating for a Cure,” took place on June 2 as part of our participation in Scleroderma Awareness Month. The event of
3K views6 months ago
FacebookScleroderma Research Foundation
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Check it out: Dr. Gregory Gordon breaks down CONQUEST on Keep It Science! 🎧 In this video, Dr. Gregory Gordon, the SRF's Chief Medical Officer, joins the conversation and shares insights on CONQUEST—the SRF’s global clinical trial platform designed to accelerate treatment development in scleroderma. Hosted by science communicators Dr. Elisabeth Kugler (diagnosed in 2021 with scleroderma) and Dr. Nick Gaunt, the podcast shines a spotlight on rare diseases, bringing complex research to life throu
3.9K views6 months ago
FacebookScleroderma Research Foundation
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We’re gearing up for Cool Comedy • Hot Cuisine this week with a fun look back—come walk down memory lane with @susanfeniger, who started the event with SRF Founder Sharon Monsky in 1987. Cool Comedy • Hot Cuisine (CCHC) hits NYC’s iconic Edison Ballroom next Wednesday, November 12. Over the years, world-class performers have generously donated their time and talents to support scleroderma research—and this year's line up is no exception! ✨ Hannibal Buress ✨ Kelsey Cook ✨ Jim Gaffigan ✨ Nikki Gla
1.6K views5 months ago
FacebookScleroderma Research Foundation
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Jordan C. shares his sister’s story of living with juvenile scleroderma—and why scleroderma research is so important to him. To turn that passion into action, his John Mayer tribute band is hosting a benefit concert in support of the SRF! We’re so grateful for his dedication and creativity in raising awareness and funds for research. His efforts help bring visibility to scleroderma and move us closer to better treatments and a cure. #SRFcure #sclerodermaresearch #scleroderma | Scleroderma Resear
1.2K views7 months ago
FacebookScleroderma Research Foundation
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What is CONQUER—and why is it so important for scleroderma research? 🔬 In a new video shared at the 2025 SRF Patient Forum, CONQUER Steering Committee Co-Chair Dr. Shervin Assassi breaks down how this bio-registry is helping researchers better understand systemic sclerosis. Funded by the SRF, CONQUER collects clinical data and biosamples from people newly diagnosed with scleroderma, giving researchers the tools they need to discover better treatments and, eventually, a cure. Learn more about ho
5.8K views9 months ago
FacebookScleroderma Research Foundation
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In this clip from the 2024 Patient Forum, Amy shares her top lifehack for managing life with scleroderma: trust your instincts and speak up for your health. 📣 As Amy explains, advocating for yourself—whether by reaching out to your doctor or confiding in a caregiver—can be a game-changer when navigating the challenges of scleroderma. The 2024 SRF Annual Patient Forum, "Collaborating for a Cure", took place on June 3 as part of our participation in Scleroderma Awareness Month. This event offered
7K viewsJan 15, 2025
FacebookScleroderma Research Foundation
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SRF-founding board member Susan Feniger explains what scleroderma is and how our Cool Comedy • Hot Cuisine fundraiser helps move research forward on live TV, reaching millions of viewers! 📺 As part of a cooking demo with CBS Los Angeles, Susan shared what scleroderma is and why she's passionate about finding a cure. A close college friend of SRF-founder Sharon Monsky, Susan immediately said yes when Sharon asked her to help found the Scleroderma Research Foundation. Since collaborating with Sha
1.6K viewsSep 24, 2024
FacebookScleroderma Research Foundation
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Check out this video: Grace shares how scleroderma shaped her life and fundraises for a cure 🎥 At just eight years old, Grace Pour was diagnosed with scleroderma. These days, she is a passionate advocate for scleroderma awareness, sharing her story with medical students, organizing fundraising events, and inspiring others to get involved in the search for better treatments and, one day, a cure. Alongside her parents, Brian and Pamela, Grace is partnering with Jeep Jamboree USA to shine a light
3.3K views4 months ago
FacebookScleroderma Research Foundation
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Watch now: How Dr. Michael Longaker, Stanford University and SRF-Funded researcher, brings a unique perspective to solving scleroderma. Right now, you have a powerful opportunity to accelerate critical scleroderma research. Your support of the SRF Research Challenge fuels groundbreaking projects like Dr. Longaker—work that rethinks how to approach fibrosis, bringing new hope to people with scleroderma. Now more than ever, your gift helps keep promising research on track and brings us one step cl
3.3K views8 months ago
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Want to learn how to ease some scleroderma symptoms without medications? Check out this 2024 Patient Forum highlight 🎥 In this clip from the 2024 Patient Forum, Dr. Ankoor Shah (Associate Professor of Medicine, Duke University) reviews options for the non-pharmacological management of systemic sclerosis. His session covers innovative approaches for managing Raynaud's Phenomenon, digital ulcers, GI symptoms, joint pain, contractures, and fatigue. To learn more about symptom management in systemi
3.5K viewsSep 11, 2024
FacebookScleroderma Research Foundation
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"I want people to know that you can live a full life with chronic illness," shares She Shutes. (dx 2017). "It's not over—it's just different." Watch the video to hear her reflect on the ways scleroderma has changed her life—both the challenges and the growth that came with them—and why she’s passionate about research. We are grateful to She Shutes for sharing her journey. Every story helps build understanding and awareness of how scleroderma can shape people’s lives. Your story matters, too! You
5.1K views6 months ago
FacebookScleroderma Research Foundation
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Join SRF Board Member Susan Feniger and #SayScleroderma for Scleroderma Awareness Month 🗣️ Scleroderma is an autoimmune disorder—a rheumatic disease that causes inflammation in the skin and other areas of the body. And, it's an extremely complex disease that can progress in very variable ways in individual patients. That's why we—and Susan—cannot wait to share "Collaborating for a Cure," the SRF Patient Forum, with you in just 2 days on June 6th. You'll learn all about scleroderma's variability
1K viewsJun 4, 2023
FacebookScleroderma Research Foundation
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Scleroderma Research Fndn. on Instagram: "This month, we hold two extraordinary people especially close in our hearts: Bob Saget and his sister, Gay. January 9th marks both Gay’s birthday and four years since we, and the world, lost Bob. Bob’s dedication to advancing the SRF’s mission was driven by his deep love for his sister and his commitment to honoring her experiences with scleroderma. For more than three decades, he was a passionate advocate—raising national awareness, championing research
5.6K views3 months ago
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