Videos

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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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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1:51 Poll on Mental Health and Vasculitis.
7:46 Screening tools.
10:05 Prevalence: Depression and anxiety.
11:10 Prevalence by vasculitis subtype.
11:49 Stress: Role and potential triggers.
15:21 Clinical recommendations.
16:22 Mindfulness
20:41 The inflammatory response.
23:25 Self-efficacy
26:41 Penn patient data.
29:58 Why zebras don't get ulcers.
30:40 Two meditation exercises.
41:38: Q: Do you have any suggestions about doing meditation when you're in so much pain?
44:34 Q: How do you find ways to reduce anxiety before a doctor visit, or testing?
46:35 Q: I get anxious because I can see the test results before my doctor. Any ideas to reduce this stress?
48:47 Q: I have trouble communicating about my concern of going into a flare with family members. I feel like they are judging me. What do you suggest?
50:44 Q: Can meds given to treat anxiety or depression interfere with our treatments for
vasculitis?

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2:23 Audience poll.
4:50 Why it matters to know about your heart health with vasculitis.
6:06 Your 5-Point Heart Checklist
7:57 What is vasculitis?
13:55 Your diagnosis timing matters.
15:19 Controlling your disease protects your heart.
16:47 Watch for traditional risk factors.
20:07 Blood clots are a real concern.
23:26 Build your heart-protection plan.
26:40 Heart concerns by type of vasculitis.
28:35 Questions to ask your doctor.
31:52 Remember these 5 things.
Q: 32:46 Does vasculitis make heart procedures like bypass riskier?
Q:33:44 Is there a difference between the damage from Vasculitis and normal atherosclerosis on cat scans and MRIs?
Q35:21 Does the increased increase include small vessel vasculitis cutaneous, previously known as leukocytoclastic vasculitis?
Q36:35 Are varicose veins related to this at all, or considered a red flag?
Q37:52 Is it good to have your heart health checked even if you don't have cardiac issues with your vasculitis?
Q40:50 Have you seen any patients or research where vasculitis has affected specifically the sinoatrial node - resulting in brachychardia with regular heart function otherwise?
Q42:30 My husband has ANCA vasculitis and his cardio wants him to take a statin. At the same time his rheumatologist said statins can cause a vasculitis flare. In general, is there a particular statin that is safer in vasculitis?
Q44:39 I recently found out I have an aneurysm in my hepatic artery. I’m due for my rituximab infusion. Will that help correct the aneurysm? Is there a treatment for this?
Q45:56 I have urticarial vasculitis. I recently wore a heart monitor for 3 days. The rhythm was normal. However, my heart rate was high. 21% of the time it was between 90 and 170 bpm. This was without exercising. Do you think this could be related to the vasculitis or is it just a coincidence? My cardiologist is not familiar with vasculitis.
Q49:02 What are signs of blood clots?
Q51:02 Can you quantify specific measures for inflammation, how often to measure, & resulting risks for GPA/AAV?

Vasculitis can affect the heart and the blood vessels connected to it, making cardiac health an important part of disease management. Understanding these risks can help patients recognize symptoms early and partner more effectively with their care team.

In this patient-friendly webinar, Dr. Alison Bays, Assistant Professor of Rheumatology at UW Medicine, explains how vasculitis can impact the heart and what patients need to know to protect their cardiovascular health.

This session will cover:
- How vasculitis can affect the heart and blood vessels
- Symptoms that may signal cardiac involvement
- How doctors evaluate and treat heart-related complications
- Ways patients can partner with their care team to support heart health

Designed for patients and caregivers, this webinar offers clear guidance on a complex topic and includes a live Q&A to answer your questions.

Register to take an informed step toward protecting your heart health while living with vasculitis.

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Early diagnosis can make all the difference in vasculitis — and in this inspiring video, three patients share how attentive doctors recognized the signs quickly, leading to faster treatment, fewer complications, and a second chance at living fully.

Physicians also explain why diagnosing vasculitis can be challenging, and why recognizing the clues early is so critical for preventing serious organ damage. Through the Vasculitis Foundation’s V-RED (Vasculitis Recognizing Excellence in Diagnosis) program, these patients honor the clinicians who connected the dots, acted decisively, and helped change the course of their disease.

Their stories highlight the power of awareness, collaboration, and expert care — and why early diagnosis can make all the difference in a patient's life. Thank you to our 2025 V-RED sponsor, AstraZeneca!

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Watch this VF On Demand webinar featuring Dr. Guy Katz as he answers patient-submitted
questions that were not covered in the first webinar.
In this brief Q&A session, Dr. Katz provides a clearer understanding of IgG4 disease and
explains how UPLIZNA® may be used as a treatment option for patients with vasculitis.

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1:46 Is IgG4-related disease the same as having high IgG4 levels?
6:21 Can a blood test show if I have too much IgG4, and what does that mean for my
treatment?
8:25 Why does IgG4 cause problems in some people but not others?
10:30 How long do B cells stay depleted after UPLIZNA® treatment, and do they come
back?
12:56 What's the difference between targeting B cells versus targeting the antibodies they
make?
15:03 Is this drug being looked at for other vasculitis indications?

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