Videos

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.

0:00
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.

0:00
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.

0:00
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.

0:00
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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We’re heading to the 2025 American College of Rheumatology (ACR) Convergence!

Join us for an inside look at the biggest event in rheumatology — where new discoveries and patient stories come together to shape the future of vasculitis care.

📅 Follow along October 26–28 and subscribe so you don’t miss a moment!

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Join us for an informative webinar designed for patients with vasculitis affecting the kidneys. This webinar is ideal for patients, caregivers, and anyone seeking to better understand the impact of vasculitis on kidney health. Presented by Dr. Suneel Udani.

0:00
2:07 Survey of audience about impact of vasculitis on kidneys
6:56 Understanding the kidney
9:30 The Glomerulus
10:33 Clinical manifestations
12:15 An inflamed glomerulus
18:29 Crescentic glomerulonephritis
19:10 Clinical manifestations outside of the kidney
20:26 Lab testing
23:12 Treatment guide
29:09 What should I expect during treatment?
31:19 When should I feel better?
32:27 Will I be cured?
34:24 Maintenance of remission
35:46 Treating kidney disease—general principles
40:54 Q: Researchers are trying to resuscitate dead cells in diseases such as diabetes and spinal injury. Are you aware of any research on recovering dead granules for kidneys?
42:08 Q: Are there clinical trials specifically focused on kidney involvement with vasculitis?
44:28 Q: Will a kidney damage occur more aggressively with a relapse if someone already has kidney damage/scarring?
45:24 Q: How do you know if the treatment is working between blood tests? What is a reasonable time before each testing?
48:21 Q: Is it a cause for concern if I see a lot of bubbles and foam in my urine?
49:30 Q: Since high blood pressure is a sign of kidney disease, can taking blood pressure medicine "hide" kidney disease - especially a vasculitis flare?
50:52 Q: Frequent urination at night. I understand the kidney normally concentrates urine at night but when damaged it may not do this. Does this ever improve?
52:35 Q: I am an 82-yr old female diagnosed with MPO- ANCA in August 2025. Are there any studies/ongoing research of "geriatric patients? “Or am I the lone wolf with this disease?
53:46 Q: While you are being treated (active disease) are the kidneys still sustaining damage?
55:13 Q: My doctor is watching my kidney numbers really close. At what point should I be concerned enough to see a nephrologist?

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Watch this informative, insightful webinar exploring the impact of urticarial vasculitis (UV), a rare condition where small blood vessels in the skin become inflamed, leading to persistent, hive-like rashes that may burn or sting, often accompanied by systemic symptoms like joint pain or fatigue.

This live webinar brings together two patients living with UV, sharing their personal experiences, alongside Dr. Galen Foulke, a renowned vasculitis specialist.

0:00
2:43 Poll on impact of UV
7:34 Roundtable question: What are some of the biggest challenges you face with UV?
7:48 Jessica’s response.
9:14 Julie’s response.
13:47 What management strategies have you tried and how have they impacted your core quality of life?
18:02: What would your advice be to someone who has just been diagnosed with UV?
26:53: Q: I’ve read that UV can be part of a neoplastic syndrome for cancer. How much of a risk is this, and does it increase with autoantibodies also associated with neoplastic syndromes? Should we be having additional screenings or tests?
29:23: Q: The majority of my outbreaks are caused by medications. Due to this, I am “allergic” to many medications. Is this common to have most, if not all, outbreaks due to reactions to medications?
32:55 Q: Do you have advice on how to manage a work life or career when you are dealing with UV?
35:50 Q: My doctor diagnosed me with HUVS because I have lupus, so he said there is probably multiorgan involvement. However, I question if that is true based on that. Can that statement be made or do the complement levels have to be tested to diagnose HUVS after being diagnosed with UV?
40:04 Q: Can vaccinations like flu or COVID cause UV flare-ups?
43:35 Q: Do you have experience with prescribing Tacrolimus ointment?
45:01 Q: . Have you seen or do you believe GLP-1s can trigger and flare up? 2) Does microdosing of GLP-1s help decrease flare symptoms?
47:22 Q: Do you know of any research currently going on that could potentially help UV patients?
48:42 Q: Any last words of advice from Jessica and Julia?
51:58 Learn about VF Resources, including Find-A-Doctor

Visit the Vasculitis Foundation website to find more resources on Urticarial Vasculitis: https://vasculitisfoundation.org/education/vasculitis-types/urticarial-vasculitis/

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In this companion video to the Navigating Your Vasculitis Journey guidebook, the author, Stacey Ivits, shares tips and insights on navigating changing relationships and managing financial, time, and energy resources when you are living with vasculitis.
Learn more about the Navigating Your Vasculitis Journey guidebook https://vasculitisfoundation.org/living-well/mental-wellness/

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Treatment Access Resources: https://vasculitisfoundation.org/wp-content/uploads/2025/10/Treatment-Access-Resources_10.2025.pdf

https://vasculitisfoundation.org/wp-content/uploads/2025/10/Overcoming-Barriers-to-Vasculitis-Treatment_1008225_FINAL.pdf

Living with vasculitis can bring challenges—not just with symptoms, but with getting the treatments you need. Victory over Vasculitis patient ambassadors, Jennifer Gordon and Molly McManus, share practical strategies patients can use to advocate for care and overcome barriers such as:
Appealing insurance denials and strengthening your case for coverage
Finding and using copay assistance programs (and navigating copay accumulators)
Lowering treatment costs through proven tips and resources
Together, we’ll explore how to break down barriers and make care more accessible for people living with vasculitis.

0:00
6:25 Navigating insurance. The system is broken.
9:33 First steps when a claim is denied.
12:58 Work closely with your doctor.
15:55 Insurance drug tiers.
17:57 Co-pay assistance.
21:42 HELP Copays Act. Get involved.
22:30 Co-pay accumulators.
23:00 Treatment access assistance.
28:22 Medication shortages.
29:40 Seeing specialists.
30:46 Avoiding Pre-Authorization Pitfalls
31:45 Tips for saving on out-patient tests.

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0:00
2:34 The audience poll on remission
6:49 Oncology definition of remission
10:29 Remission examples
14:55 Considerations for remission
15:44 Monitoring for relapse
24:16 Monitoring for disease complications
27:59 Monitoring for treatment toxicity/complications
33:12 Summary
34:27 Newly diagnosed. How do you know when you are in remission?
37:19 How long does remission usually last?
39:53 What imaging is routinely used for GCA?
41:51 What cancer tests are needed if you were on Cyclophosphamide?
43:31 What should I know about why my liver function test is trending upward when I’m in remission?
46:30 Where is research at with B-Cell therapy?
47:29 Any thoughts on having hip surgery when I’m on prednisone?
51:02 For young children who have GPA (age 14) , have you taken the child off all medications when in remission? Do you usually keep them on all medications for longer (Rituximab and Azathioprine )? Wasn’t sure if it’s different for children.
52:04 How can you call it remission if the disease is still requiring immunosuppressives or biologics to keep it under control?
55:20 GPA - once you stop treatment (Rituximab), what is the most common interval for relapse of remission?
56:40 Is there any research being done on how to prolong remission?

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0:00
2:42 Results of webinar survey of pulmonary involvement.
5:24 Structure and vessels of the lungs.
8:20 Our diagnostic tools.
10:50 Asthma.
17:16 Airway management: Mucosal Inflammation.
22:31 Lung nodules and cavities.
25:09 Interstitial lung disease.
27:59 Diffuse Alveolar Hemorrhage.
29:55 Vascular stenoses & aneurysms.
32:00 Potpourri
33:18 Complications of treatment.
35:09 Key points.
36:00 Are pulmonary embolisms a potential result/symptom of GPA?
37:28 If you have part of your lung removed, can it regenerate?
38:30 In Dr. Fussner's career, how often has she seen or known a person needing a lung transplant due to vasculitis?
39:22 If you have minimal lung scarring from bleeding in the lungs, what is the long-term effect of this scarring?
40:44 Is a bronchoscopy painful?
42:06 Has non-tuberculosis been a common diagnosis?
42:49 Would you recommend a biopsy if imaging picks up a ground-glass nodule?
44:48 How much of a factor does a prior history of smoking play in treating pulmonary issues in vasculitis?
46:28 How long would vasculitis have to be untreated for some of these pulmonary complications, such as scarring?
47:39 Does Rituxan relieve inflammation in lung tissue and/or improve breathing

View Dr. Fussner's webinar slide presentation here. https://shorturl.fm/NoYFi

Watch this informative overview led by Dr. Lynn Fussner on vasculitis and its impact on the lungs (the pulmonary system). Vasculitis is a condition where your blood vessels become inflamed, which can affect various parts of the body, including the lungs. This can lead to breathing issues and other complications.

Visit the Vasculitis Foundation to learn about our other resources at www.vasculitisfoundation.org.

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0:00
3:36 How has fatigue affected you physically?
11:46 How has fatigue affected you mentally?
20:50 How have you learned to cope and deal with the fatigue?
35:50 Q: Is there a link between chronic pain and fatigue?
36:33 Q: How has fatigue affected your relationship with friends and family?
41:24 Q: Can Actemra cause fatigue?
41 :59 Q : Can lung damage cause fatigue ?
43 :30 Q : How do patients manage to work and have a career with the fatigue?
53:53 Q: Can Rituximab contribute to fatigue?
54:58 Q: What gives you hope to go on despite the struggle with fatigue and pain from vasculitis?

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