Videos

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).


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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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This webinar is free, but you must register in advance. Register here on the VF website: https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/what-you-need-to-know-about-upliznar-5a3wTV10mor/overview

Join us for an informative and engaging webinar, “What You Need to Know About UPLIZNA®,” presented 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.

In this webinar, Dr. Katz will provide a comprehensive overview of:

What is UPLIZNA®?
IgG4-RD and its connection to Vasculitis
Clinical efficacy and real-world impact
Administration and dosing guidance
Safety profile and potential side effects
Patient support services and access to treatment
Following the presentation, attendees will have the opportunity to participate in a live Q&A session.



Don’t miss this opportunity to learn more about an FDA-approved therapy that’s changing the landscape of IgG4-RD care.

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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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In this companion video to the Navigating Your Vasculitis Journey guidebook, the author, Stacey Ivits, leads viewers through a mindfulness exercise called the Pause & Scan.
Learn more about the Navigating Your Vasculitis Journey guidebook https://vasculitisfoundation.org/living-well/mental-wellness/

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In this companion video to the Navigating Your Vasculitis Journey guidebook, the author, Stacey Ivits, explores mindfulness tools that can help calm your nervous system and reduce stress.
Learn more about the Navigating Your Vasculitis Journey guidebook https://vasculitisfoundation.org/living-well/mental-wellness/

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In this companion video to the Navigating Your Vasculitis Journey guidebook, the author, Stacey Ivits, explores the necessity for fierce self-compassion - such as setting boundaries and prioritizing self care - 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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In this companion video to the Navigating Your Vasculitis Journey guidebook, the author, Stacey Ivits, explores the importance of meeting psychological, physiological, and care needs consistently 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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0:00
2:18 PMR is not always PMR
3:05 2022 ACR / EULAR classification GCA
3:38 HALO Count Diagnostics
4:55 Ultra high frequency imaging for GCA
5:31 Diagnostic Work Up Giant cell arteritis
7:56 Prednisone and GCA / PMR
10:29 PMR treatment studies summary
12:34 TOPAZIA Trial: Treatment of GCA with ultra-short steroids and Tocilizumab
14:28 titAIN Study
16:30 Session Summary
17:28 Q: Tell us again about the key highlights from EULAR about PMR and GCA
18:22 Q: What does a Delphi Exercise mean?
19:29 Q: Can you tell us what you heard about precision medicine and use of AI in imaging at EULAR?

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0:00
5:42 Airway disease in GPA: Laryngeal Stenosis, Subglottic Stenosis, Bronchial Stenosis
7:14 Why does GPA occur?
8:51 Bacteria (Staph Aureus) Are Associated With Airway Disease Relapse.
9:34 How Do You Treat Airway Obstruction in GPA?
14:17 Representative Case of Airway Obstruction in GPA
18:00 Airway Stents
19:51 Airway Stents Can Migrate
20:25 Airway Treatment Considerations
23:02 Q: With EGPA-AAV, what is the significance of a decreased DLCO? How is it determined which pathway could be? causing the decreased DLCO -if it is not Pulmonary hypertension?
24:32 Q: Can you review the symptoms of airway disease?
25:52 Q: Can disease also cause swallowing difficulties with food and liquids?
26:56 Q: Do you see patients who have GPA under control according to blood work but have airway restriction in the bronchial tube?
28:26 Q: Is an increase in presentation of thick mucus an indication of airway narrowing that should be concerning?
29:22 Q: If someone has MPA could this be part of their disease
31:17 Q: Does Rituxin, which I take for my GPA help prevent these breathing issues?
32:26 Q: How many airway subglottic stretches can be done? I've had two and suspect that I may be due for another.
33:33 Q: How soon can subglottic stenosis come back after endoscopic treatment?
34:12 Q: Would a speech therapist help with breathing issues?
35:49 Q: When considering having these symptoms checked out, who is the best person to try to be seen? Currently, I am being followed by a rheumatologist. Is there a different specialist to seek support for these specific concerns?
36:56 Q: Is there a relation to an increased production of mucus (i.e., coughing and clearing throat more frequently) post SGS dilation?
38:10 Q: Can you tell the difference between inflammation and an infection vs GPA?

August 2025

Visit the Vasculitis Foundation (www.vasculitisfoundation.org).

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0:00
2:09 GCA: What to measure if the drug is working
4:05 Demographics of patients
4:24 12 key items to help measure how patients are responding to treatment for GCA
7:45 GCA Fast Track Clinics
17:05 More tools to help diagnose GCA. Understanding the cause of vision loss.
20:23 Possible use of AI technology in diagnosing GCA with ultrasound
22:11 Upadacitinib (UPA) once daily pill for GCA. Is UPA safe compared to steroids?
27:32 Preliminary study: Can Avacopan be used to treat GCA? Much more work to be done.

EULAR stands for the European League Against Rheumatism. It is an organization dedicated to enhancing the treatment, prevention, and research of rheumatic and musculoskeletal diseases. EULAR brings together healthcare professionals, researchers, and patients to advance clinical care, scientific research, and education in rheumatology across Europe and beyond. It is known for developing guidelines, hosting annual congresses, and supporting initiatives like outcome measures for diseases such as rheumatoid arthritis.

Learn more about Giant Cell Arteritis. Visit the Vasculitis Foundation webpage at: https://vasculitisfoundation.org/education/vasculitis-types/giant-cell-arteritis/

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0:00
1:12 Can TAVNEOS® be used in children?
2:04 How does TAVNEOS® help patients to achieve and sustain remission?
3:26 Is TAVNEOS® appropriate for patients with liver disease or a kidney transplant?
4:26 Concerning TAVNEOS® vs. Rituximab for Maintenance---In sustained remission, which drug is typically tapered first—and why?
5:24 Does TAVNEOS® need to be tapered, or can it be stopped abruptly?
6:23 Can patients resume TAVNEOS® if they flare after stopping?
7:12 Was prednisone used together with TAVNEOS® in clinical trials?
8:55 What is the status of the ongoing long-term (5-year) trial? Can patients enroll?
10:21 Are there specific lab tests to track if TAVNEOS® is “working”?
11:28 We got several questions from patients related to affordability and insurance
coverage. Do you have any comments about this issue?

Avacopan (Tavneos®) Q&A
July 2025

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