Videos

Learn how the Vasculitis Patient-Powered Research Network (VPPRN) is bringing patients, caregivers, clinicians, and researchers together to advance vasculitis research around the world.

In this presentation, Dr. Peter Merkel and Dr. Jennifer Gordon explain how the VPPRN works, how patients can participate in research from home, and how patient-reported experiences are helping researchers better understand vasculitis, treatment, quality of life, and more. They also highlight current and upcoming VPPRN studies and answer questions about getting involved.

Discover how sharing your experience can help shape the future of vasculitis research.

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What do Grey's Anatomy, ER, and The Resident have in common?

At the 2026 International Vasculitis Symposium, patients and physicians faced off in a hilarious Family Feud-style game testing their knowledge of medical dramas. From iconic TV doctors to emergency room clichés, both teams battled it out while the audience joined in with plenty of laughs along the way.

More than just a game, this session celebrated the unique partnership between patients and healthcare providers that makes the vasculitis community so special.

Thank you to everyone who participated and helped make the 2026 International Vasculitis Symposium an unforgettable weekend of learning, connection, and fun.

Learn more about the Vasculitis Foundation:
https://www.vasculitisfoundation.org

#Vasculitis #VasculitisFoundation #MedicalTrivia #FamilyFeud #RareDisease #PatientCommunity #MedicalEducation #Symposium

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Every three years, the vasculitis community comes together for a weekend of learning, connection, and hope.

The 2026 International Vasculitis Symposium brought together patients, caregivers, physicians, researchers, and advocates from around the world to share the latest advances in vasculitis care, hear inspiring personal stories, build lasting friendships, and support one another.

From educational sessions and expert panels to wellness activities, community celebrations, and meaningful conversations, this recap captures just a few of the moments that made this year's Symposium so special.

Thank you to everyone who joined us in Denver and helped make the 2026 Symposium an unforgettable experience. Together, we're advancing research, strengthening our community, and improving the lives of everyone affected by vasculitis.

Learn more about the Vasculitis Foundation: https://www.vasculitisfoundation.org

#Vasculitis #VasculitisFoundation #RareDisease #PatientCommunity #MedicalResearch #AutoimmuneDisease #Symposium #RareDiseaseAwareness

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Forty years ago, one patient refused to accept that people living with vasculitis had to face a rare disease alone. What began as a small support group around a kitchen table has grown into the global Vasculitis Foundation—a community dedicated to advancing research, providing education and support, and improving the lives of everyone affected by vasculitis.

This special anniversary video celebrates four decades of progress made possible by patients, families, physicians, researchers, volunteers, donors, and advocates working together. From funding groundbreaking research and training future vasculitis specialists to connecting patients through support groups, educational resources, and international events, every milestone has been driven by one shared belief:

No one should face vasculitis alone.

As we celebrate 40 years of hope, resilience, and discovery, we're also looking ahead. Together, we can continue investing in research, supporting every patient and family, and ensuring a brighter future for everyone impacted by vasculitis.

Learn more about the Vasculitis Foundation: https://vasculitisfoundation.org

Support the next 40 years: https://vasculitisfoundation.org/donate

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The transition from pediatric to adult care is a critical—and often complex—milestone for young people living with vasculitis and their families.

In this special webinar, the Morrow family shares their real-world experience navigating this transition with their son, Nick. After being featured in Vasculitis Foundation videos in 2012 and 2015, they return to reflect on their journey, offering a rare, long-term perspective on growing up with vasculitis and moving into adulthood.

This session explores:
• The challenges of shifting responsibility from parent to patient
• Building independence while managing a chronic condition
• What changes—and what stays the same—during the transition to adult care
• Lessons learned from years of lived experience

Joining the conversation, Dr. Samuel Gagne, pediatric rheumatologist at UPMC Children’s Hospital of Pittsburgh, provides clinical insight on how patients and families can successfully navigate this transition and prepare for adult care.

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In our new series, Vasculitis Journeys Revisited, we reconnect with patients the Vasculitis Foundation has followed for more than a decade—exploring what long-term life with vasculitis really looks like.

In this webinar, we welcome back Brook Raphael, first interviewed over 12 years ago, as she shares her experience living with vasculitis today.

You’ll hear about the challenges she’s faced, the goals she’s achieved, and the lessons she’s learned managing vasculitis over time—from diagnosis to long-term care.

This session offers a real, honest look at long-term living with vasculitis, including how life evolves, what changes, and what helps along the way.

Whether you’re newly diagnosed or years into your journey, this conversation provides perspective, encouragement, and connection.

Register to hear a real patient story and learn what life with vasculitis can look like over time.

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When Don Nagle's daughter Sarah was diagnosed with vasculitis at just 19, his family found themselves searching for answers to a disease most people have never heard of.

What they found was this community.

Instead of simply moving forward, Don turned that experience into action by joining the Foundation's Board of Directors, and helping to expand the VPPRN, a global patient registry now connecting thousands and accelerating research that changes lives.

This Vasculitis Awareness Month, we're proud to honor Don as one of our 2026 Community Heroes. His story is proof of what's possible when people show up for this community. Will you?

👉 Support VAM at vasculitisfoundation.org/vam

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0:00
2:56 Introductions
4:55 Patients: Share Your Experiences with the FDA
5:42 The Basics: What is avacopan (Tavneos)?
6:35 History of avacopan (Tavneos)
14:24 Immediate Safety Questions People Are Asking
17:19 Risk Interpretation Questions
22:18 Efficacy & Data Integrity Questions
27:11 Real-World Decision Questions
31:20 Physician Behavior Questions
34:16 Access & Future Questions
37:40 Next Steps

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2:36 Zoom audience poll about vaccines.
7:07 Overview of VPPRN Survey About Vaccines.
9:11 What is in a vaccine?
10:19 Types of vaccines.
12:31: Know your risk to help you decide.
15:40 Benefits of the flu vaccination 2021-2022
16:59 Benefits of newer vaccines.
17:57 Vasculitis flares following illness.
19:10 Can vaccines make me sick?
24:14 Can vaccination cause my vasculitis to flare?
26:19 Do you still need to get vaccination against the "old diseases"?
31:49 Vaccine allergies.
36:09 Do I need to arrange my vaccinations around my medications?
39:12 Live attenuated vaccines: the exception.
42:53 Summary.
44:24 Q: Where can I find a copy of all the vaccinations I've had?
46:04 Q: Do I need to get an antibody test to see if my measle resistance is adequate?
47:35 Q: Any thoughts about what the findings in the vaccine survey are telling you?
50:31 Q: Are you aware of patients with vasculitis who have had significant lymphatic inflammation following COVID boosters?
52:31 Q: What if I have a doctor who doesn't bring up about vaccines? Should I bring it up?
54:32 Q: I'm being treated with Rituximab for GPA. If B cells are being depleted will I need to re-learn my disease resistance through vaccines or some other way after treatment ends?
57:14 Q: If my wife gets a measles vaccine should we quarantine apart for a few weeks?
58:38 Q: In one of your slides for the benefits of reducing disease burden-- did not have data for the reducing and risk of serious of COVID vaccine. Do you know what those numbers are?
1:01:03 Q: Any information about the Moderna, or other COVID vaccines causing vasculitis?

Download a PDF copy of the slide presentation at: https://vasculitisfoundation.org/wp-content/uploads/2026/05/FINvaccinewebVF.pdf

Visit the Vasculitis Foundation website to explore all of our resources.
www.vasculitisfoundation.org

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What do you do when a rare disease diagnosis turns your world upside down? If you're Dr. Jennifer Gordon, you turn it into purpose.

This Vasculitis Awareness Month, we're proud to honor Jenn as one of our 2026 Community Heroes, proof that patients don't just benefit from research. They can lead it.

👉 Support VAM at vasculitisfoundation.org/vam

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Families facing vasculitis deserve answers, especially when it impacts children 💙

During this Vasculitis Awareness Month, we are proud to recognize 2026 Community Hero Dr. Jessica Bloom, whose work is helping transform pediatric vasculitis care and improve outcomes for young patients.

Leaders like Dr. Bloom are advancing research, improving understanding of the disease, and bringing us closer to better, more personalized care for families affected by vasculitis.

Because of supporters like you, this work can continue to move forward.

💙 Support Vasculitis Awareness Month: vasculitisfoundation.org/vam

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Pain, stiffness, and fatigue can make staying active with vasculitis feel difficult—but the right kind of movement can support mobility, reduce discomfort, and improve overall wellbeing.

In this practical, patient-focused webinar, physiotherapy clinical specialist and Senior Lecturer at Keele University Dr. Anne O’Brien shares realistic strategies to help people living with vasculitis move safely and confidently.

You’ll learn about:
• Modifying activity based on energy levels and symptoms
• Safe exercises and stretches to support flexibility and mobility
• Avoiding the “overdo it → pay for it later” cycle
• How gentle movement can support both physical and emotional health

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When someone hears the word vasculitis, many feel overwhelmed and alone.

That’s why Community Hero Dana DeMoulin is so important. Dana facilitates more than 20 support groups each month, helping patients connect, feel understood, and find their footing in a new reality.

Support groups are often the first place people realize they are not alone.

💙 Your gift keeps these life-changing connections strong: www.vasculitisfoundation.org/donate

Learn more at www.vasculitisfoundation.org/vam

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“No one should face vasculitis alone.”

For 40 years, the Vasculitis Foundation has been working to turn that belief into reality — building a global community that connects patients, families, physicians, and researchers, while advancing research, improving diagnosis, and creating space for support and understanding.

In this special Community Heroes: 40 Years of Strength video, we honor five individuals whose impact has helped shape the vasculitis community:

▪️ Dana DeMoulin — bringing connection and belonging to patients through support groups
▪️ Don Nagle — a parent advocate who turned personal experience into lasting impact
▪️ Dr. Jennifer Gordon — advancing patient-powered research as both a scientist and a patient
▪️ Megan Madison — transforming a long and difficult diagnosis journey into advocacy
▪️ Dr. Jessica Bloom — improving care and research for children living with vasculitis

Together, their stories reflect the heart of this community — resilience, compassion, and the power of coming together in the face of rare disease.

Living with vasculitis can feel isolating. But through connection, research, and shared experience, patients and families are finding support, answers, and hope.

As we celebrate four decades of progress, we also look ahead. With continued support, we can expand research, strengthen community, and improve outcomes for everyone affected by vasculitis.

💻 Learn more: www.vasculitisfoundation.org
🪙 Support the next 40 years: www.vasculitisfoundation.org/donate

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Register for this exciting webinar at: https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/how-vasculitis-care-has-evolved-past-present-and-hope-for-the-future-5a3wTV1JIFB/overview

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Rennie Rhee, MD, MSCE from the University of Pennsylvania discusses ANCA (Anti-Neutrophil Cytoplasmic Antibodies) through the V-SNIFF study conducted by the VPPRN.

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From the 2026 Australia International Vasculitis Workshop Community Patient Conference

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From the 2026 Australia International Vasculitis Workshop Community Patient Conference

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From the 2026 Australia International Vasculitis Workshop Community Patient Conference

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