Videos

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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Central nervous system vasculitis (CNS vasculitis) can be complex, rare, and difficult to diagnose. In this patient-focused webinar, Dr. Rula Hajj-Ali, rheumatologist and Associate Director of the Center for Vasculitis Care and Research at Cleveland Clinic, provides a clear overview of what patients and caregivers need to know.

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Watch this special webinar introducing the newly launched VPPRN’s Pediatric Vasculitis Network (PedsVPPRN), a global, online, secure platform where patients and families can directly contribute to pediatric vasculitis research by answering questions about their experiences with vasculitis.

This session begins with a brief presentation from Lead Investigators, Dr. Jessica L. Bloom, MD, MSCS and Dr. Karen E. James, MD, MSCE, who demonstrate how to access and use the registry and explain its role in supporting research.

Following the presentation, there is a roundtable discussion and Q&A featuring Drs. Bloom and James, along with the PedsVPPRN Patient Research Partners, Katrina Bargender (diagnosed with Takayasu’s arteritis in childhood) and Amy Bolton (parent of a child living with granulomatosis with polyangiitis). They share their insights on the importance of patient involvement and how the registry can shape the future of pediatric vasculitis care.

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1:53 Webinar poll.
3:55 Introducing the Pediatric Vasculitis Registry (PedsVPPRN).
6:51 Patient Research Partners.
11:00 PedsVPPRN: What do we want to know?
12:02 What makes the registry unique?
14:25 Patient-Reported Outcomes Measurement Information System.
16:27 VPPRN in action.
21:10 PedsVPPRN: What will we study?
23:36 How can you participate in research?
29:49 Patient partners talk about their involvement in VPPRN.
31:41 Q: What are the core objectives of PedsVPPRN, and what gaps in pediatric care is it designed to address?
36:16 Q: How does the age of the pediatric patient determine whether he/she can participate in PedsVPPRN?
37:51 Q: Are there other medications being researched for vasculitis in children?
40:16 Q: Can a child get involved in a case study as a control/
41:06 Q: Do you see delays in growth and puberty? Does the disease evolve in puberty and adulthood?
42:54 Q: Please comment about the impact of vasculitis on mental health.
46:42 Q: My child is very resistant to talking about being ill. It’s probably a trauma response.
Can she sign up later than I do if something changes?
48:34 Q: At what point do you treat a biochemical rise if the child is clinically well? What red flags make you treat early to prevent organ damage?

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CAR-T cell therapy is one of the most exciting frontiers in autoimmune disease research—and it may hold promise for the future of vasculitis treatment. In this VF webinar, Dr. Meghan Free and Dr. Dhruti Chen from the University of North Carolina for an engaging, patient-friendly webinar that explains this cutting-edge therapy in simple terms.

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3:35 Blood Cell Primer
4:39 Lymphocytes
5:38 What is CAR-T
8:30 CAR-T cells approved for cancer
8:52 Evolution of CAR-T cells
9:44 Why could CAR-T therapy help vasculitis?
10:44 CD19 – CAR T cells in autoimmune disease
12 :42 What results have been seen so far?
13:40 Specific trials to note, including vasculitis
16:41 Research is still preliminary
17:40 Risks and practical considerations (patient view)
19:45 Why patients should be aware (key takeaways)
21:42 Pros and cons
24:36 Practical next steps and resources
24:39 How do you define refractory vasculitis?
26:48 Q: Is CAR T therapy expected to require repeated treatments at regular intervals? After the body replenishes B cells?
27:50 Q: It’s a promising therapy, but you can talk about why expectations need to be tempered with where we are right now.
29:03 Q: Just a rough guesstimate,e how long do you think it could be until it would be a standard of care?
30:15 Q: I have a daughter with hypocomplementemic urticarial vasculitis syndrome. If CAR-T cell therapy could potentially put her in remission, why would it make more sense to keep her on mycophenolate? She is six years old and has been on Myco since June 2024
31:14 Could you tell us about the efficiency and toxicity of CAR-T compared to Rituximab?
33:12 You have referred to ANCA Vasculitis. What about non-ANCA Vasculitis?
34:00 Can you explain CAR-T cells vs CAR-NK cells?
35:26 Could the doctors explain about genetically modifying a cell? Could you speak to that idea to help reduce the concern?
37:28 Could the doctors talk about lympo depletion, that also sounds concerning.

Visit the VF website to discover all of our resources on vasculitis. www.vasculitisfoundation.org

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Join us for this informative webinar, where Ken Warrington, MD, discusses Janus kinase inhibitors (JAKi) and their potential as a treatment option for vasculitis, specifically for Giant Cell Arteritis (GCA) and Takayasu arteritis (TAK).

JAK inhibitors work by blocking the activity of Janus kinases, thus reducing the signaling of these inflammatory cytokines. Although data about JAKi is still limited, Dr. Warrington will explore the potential benefits.

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Granulomatosis with Polyangiitis (GPA) is a rare autoimmune disease that causes inflammation of small- and medium-sized blood vessels, potentially affecting organs such as the lungs, kidneys, sinuses, and joints. Because of its complexity, patients and families often face many questions about symptoms, diagnosis, treatment, and long-term management.
In this VF webinar, What You Need to Know about GPA Vasculitis, is presented by Dr. Audra Hornomanski,a rheumatologist and Clinical Assistant Professor in the Division of Immunology and Rheumatology at Stanford University. In this session, Dr. Hornomanski will provide a clear and comprehensive overview of GPA

0:00
5:57 Understanding granulomatosis with polyangiitis
7:20 What causes GPA?
9:46 Signs and symptoms
16:12 Other symptoms
18:57 Diagnostic tests
24:55 Treatment for severe disease
33:12 Treatment for non-severe disease
35:26 Other important information about the treatment plan
37:33 Treatment: Sinus disease
38:33 Disease monitoring
39:36 Reproductive health
40:48 Upcoming and ongoing research
40:41 Is there information available about women in menopause taking transdermal HRT and the risk of blood clots? My understanding the risk is lower when using transdermal. Is that correct? I would love to have info to share with my doctors.
46:49 Does a persistently elevated ANCA titer without classic findings of vasculitis have clinical significance?
48:04 Why does extreme fatigue linger even after you're in long-term remission? More exercise makes it worse. What do you recommend?
50:53 As the director of the Stanford Vasculitis clinic, do you participate in any educational sessions with your ENT providers to identify symptoms quickly and minimize the diagnosis time for GPA patients?
52:04 Once you're ANCA positive, are you always ANCA positive even in remission? Can you be ANCA positive and NOT have GPA (or eGPA or MPA)? If so, what could cause this?
53:51 Is long-term use (years) of methotrexate considered safe for GPA (sinus) to keep it in remission?
54:55 What is the distinction between severe and non-severe GPA?
56:12 My nephrologist says I can stop or do 6 months or once a year. My rheumatologist says I should keep doing it every 6 months. How often should a person do rituximab after remission?
58:04 Do you ever see a delay between symptoms in patients and elevation of labs reflecting inflammation, and what is the typical timeframe between onset of symptoms and reflecting of inflammation in labs?

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Watch this informative and engaging webinar, “What You Need to Know About Inebilizumab (Uplizna®) for IgG4-RD 2025presented by Dr. Guy Katz, rheumatologist and clinician-investigator in the Division of Rheumatology, Allergy, & Immunology at the Massachusetts General Hospital in Boston, MA.

UPLIZNA® is the first FDA-approved treatment for IgG4-related disease (IgG4-RD)—a rare, chronic, and often misdiagnosed condition that can affect multiple organs and systems of the body. Understanding this breakthrough therapy is vital for patients, caregivers, and healthcare professionals who want to stay informed about new treatment options that can make a real difference in patient care.

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3:59 What is IgG4-RD?
9:00 What is Inebilizumab?
9:37 How do antibodies work?
10:12 How does inebilizumab work?
14:45 B Cell deletion
16:21 How is inebilizumab given?
17:41 Does inebilizumab work?
23:46 Inebilizumab vs. Rituximab
27:44 Immunogenicity
31:46 Glycoengineering
32:16 Cost
32:48 Side Effects
34:15 Inebilizumab: Risk of Infection
36:27 Inebilizumab: Vaccines
40:38 How long to treat with inebilizumab?
40:57 Inebilizumab: low antibody (immunoglobulin) levels
42:45 Inebilizumab: low antibody (immunoglobulin) levels
44:21 Summary
44:59 Why should we as patients be interested and hopeful with this drug?

View the PDF slide presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/11/100525-VF-Inebilizumab.pdf

Learn about VF resources at: www.vasculitisfoundation.org

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ACR Convergence 2025 concluded with important updates on vasculitis research, clinical perspectives, and collaboration across the medical community. Researchers share their key takeaways and discuss how this progress can influence future patient care.

A special thank-you to @Amgen for sponsoring this coverage and helping us share these important updates with the vasculitis community.

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Living with vasculitis brings challenges, uncertainty, and resilience. In this inspiring video from the Vasculitis Foundation’s 2025 Annual Appeal, patients and families share their experiences of diagnosis, treatment, and life after vasculitis.

From ICU stays and treatment setbacks to finding hope through support groups and education, these powerful stories reveal what it means to face vasculitis with strength. Patients describe how they learned to advocate for themselves, adapt to new realities, and discover resilience in the support of family, community, and the Vasculitis Foundation.

The Vasculitis Foundation provides education, trusted resources, and support programs that help patients and caregivers navigate life with vasculitis. Together, we are building a stronger community and offering hope to everyone impacted by this rare disease.

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We’re bringing you updates from 2025 ACR Convergence! In this video, researchers share insights into the latest vasculitis research and what it means for the future of care.

Thank you to @Amgen for sponsoring this coverage and supporting education and awareness in vasculitis.

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This webinar is designed specifically for patients with a new diagnosis of ANCA vasculitis, those concerned about future relapse, and/or those with previously treated relapse who are seeking to understand how to manage this challenging phase of their condition. It's led by led by Dr. Mats Junek, MD, MSc, FRCPC, a rheumatologist and PhD candidate with expertise in vasculitis care and research at McMaster University in Ontario, Canada, as he addresses the critical topic of relapse in ANCA-associated vasculitis (AAV).


0:00
7:02 What is remission with vasculitis?
10:53 Symptoms with remission.
14:10 No known triggers for relapse
17:10 About maintenance therapy
20:51 PEXIVAS risk of relapse estimation tool
21:58 Measuring of risk of infection
22:09 EGPA
29:03 Future Research
30:15 Take-home points
32:09 How do treatment strategies differ between managing a relapse and managing the initial onset of vasculitis?
35:30 Could the COVID or shingles vaccine be a possible trigger of a relapse?
40:02 Is burning pain on the back of the thigh and aching, throbbing pain on the outer thigh, and sensitivity to touch a flare-up, and is each flare-up cumulative?
42:43 For GPA patients on methotrexate, how long can one be off MTX for surgery without triggering a relapse? Some doctors want patients to take methotrexate before and after surgery.
44:47 If you normally get every 6 months Rituxan and have a flare-up, is it common to do 4 months a few times?
51:21 Our immune systems weaken as we get into old age. Is there a reduced risk of flares in seniors or those over 75?
52:46 Some people remain ANCA positive while in remission. Is there a difference in relapse rates between those who remain ANCA positive versus those who don’t?
57:04 Communication between patient and doctor is critical, but we don’t want to overload an already stressed medical system. So when is it appropriate to check in with a doctor on a suspected flare? And what information is important to present?

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

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