Video Library

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2:54 What is avacopan?
3:40 Background and development.
6:30 Key Study.
8:37 What does avacopan do?
9:48 Possible side effects and risks.
11:36 Drug interactions.
13:05 Patient selection considerations.
14:49 Monitoring and follow-up.
15:50 What have we learned about avocopan since 2021?
18:28 Pros and cons
19:53 Learn more about avacopan from these resources.
20:38 Q: Can you explain induction therapy?
22:37 Q: Can you talk about this drug for pediatrics?
23:22 Q: Talk about balancing kidney vs liver when taking avacopan.
25:28 Q: Is avacopan effective with an EGPA diagnosis?
26:21 Q: Is avacopan ever used in place of prednisone for the treatment of GCA?
26:53 Q: How far are they into the Stage 4 five-year trial to understand long-term implications?
28:13 Q: When you are first diagnosed, are there some patients who start with a drug like Rituximab and just avacopan, or does everyone get some steroids?
28:43 Q: With liver toxicity being an issue would taking a liquid liver supplement be suggested?
29:11 Q: When trying to do a reeducation off of Rituximab and avacopan would you try to taper off Rituximab or avacopan first?
29:56 Q: How can I enroll in the Phase Four trial?
30:30 Q: In the Advocate Trial, were the patients matched on their intolerance to steroids?
31:03 Q: Can you clarify whether avacopan was used in conjunction with prednisone in the trials?
33:10 Q: If you’ve lost one of your own kidneys and have a transplanted kidney is avacopan indicated along with it?
34:09 Q: The drug makes me feel so much better, but the cost factor is so out of reach.
36:09 Q: Is there a blood test to see if avacopan is making a difference?
37:09 Q: What does it mean when you say, active severe disease?
37:56 Q: Do we have data from those who have been on avacopan for a year?
38:43 Q: What should I do if I miss a dose of avacopan?
39:02 Q: Can you just stop cold turkey with taking avacopan?
40:42 Q: What is a flare?

What you need to know about Avacopan
June 2023

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In this engaging webinar, six vasculitis patients share valuable tips and perspectives on navigating life with vasculitis. They explore how they handle fatigue, the mental stress of living with a chronic illness, tips for dealing with health insurance companies, and more . . .
In this webinar a reference is made to another webinar on Fatigue and Vasculitis, you can watch that webinar here https://youtu.be/-ClJ55o_O9g

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0:00
2:26 What is osteoporosis?
4:12 Hip fracture: The Devastating Toll.
6:06 The impact of steroids.
6:55 How do you test for osteoporosis?
8:09 Reasons that Medicare will pay for DXA Bone Density Testing.
9:56 What’s a T-score?
12:23 Your bone density and choices.
19:36 Regular weight-bearing exercise.
23:08 Bone nutrition: Beyond calcium and vitamin D.
25:40 Lab tests to look at secondary causes of bone loss.
27:16 FDA-approved osteoporosis medications.
30:19 What should I do first?
31:18 What if I already have osteoporosis?
33:26 Q: How prevalent is AVN with vasculitis?
35:05 Q: What are the risks of inhaled steroids?
36:07 Q: I fractured my pelvis. Does the doctor have any suggestions on what I can do?
38:20 Q: How often should I get the DEXA test?
39:35 Q: Do Rituxan or immunosuppressants affect our bone loss?
40:23 Q: What do you do to lessen the risk of bone loss in young people?

Bone Loss and Vasculitis
May 2025

Download the slides from this presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/05/OP-Bone-and-steroids-Vasculitis-Foundation-webinar-002.pdf

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0:00
5:48 How common is IgA vasculitis?
6:34 What causes IgA vasculitis?
10:24 Diagnostic criteria
13:47 What is the major complication of IgA vasculitis in the acute setting?
16:09 What is the major delayed complication of IgAV?
18:17 Patient Case
20:45 Skin biopsy not required for diagnosis
22:25 Treatment
26:54 IgA in adults
29:37 Poor prognostic factors in adults
31:13 Treatment of renal involvement
36:42 Summary
39:08 Q: Is abdominal pain and nausea common in IgA?
40:24 Q: Do reoccurrences of IgA happen years later, or sooner?
41:09 Q: Is a skin biopsy necessary for a proper diagnosis of IgA?
41:50 Q: Are there certain foods that should be avoided?
42:18 Q: Can patients with IgA vasculitis have another form of vasculitis?
42:57 Q: Can you comment on GI issues with other forms of vasculitis?

Pediatric IGA
May 2025

Download the slides here: https://vasculitisfoundation.org/wp-content/uploads/2025/05/IgA-Vasculitis-Sivaraman-5-19-2025-002.pdf

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0:00
1:55 The FDA has approved IVIG for which type of vasculitis?:
3:17 The FDA approved Avacopan® for the treatment of which types of vasculitis?

5:38 Which of the following two types of vasculitis are ANCA-associated vasculitis (AAV)?

7:25 Large vessels are affected in in these types of vasculitis.

10:10 Giant Cell Arteritis (GCA) is most closely associated with what other type of vasculitis?

11:36 People from the Mediterranean, the Middle East and Asia are more likely to get this type of vasculitis.

13:52 May is known for what awareness campaigns?

14:13 May is Vasculitis Awareness Month (VAM). Here’s how you can connect to VAM events and activities through the VF.

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0:00
2:18 Fatigue Survey Results
4:50 What is fatigue?
5:56 Common causes of fatigue?
7:08 What causes fatigue in chronic illness?
7:47 What causes fatigue in vasculitis?
8:26 The 10 most commonly described symptoms of fatigue.
10:52 Inflammation.
13:35 Inflammation and the Brain.
16:35 Medications.
21:18 Inflammation and mood.
21:40 Prevalence in vasculitis: depression.
22:57 Symptoms of depression.
25:13 Depression and anxiety: what can help?
26:31 Sleep.
30:14 How can exercise help fatigue?
34:14 Self-encouragement can be helpful.
35:08 Feeding your body for energy.
36:28 Supplements and vitamins for fatigue.
43:22 Energy takers and givers.
`48:16 Is there a good time to take Prednisone to avoid fatigue?
49:02 Does being in remission mean you won’t have fatigue?
51:55 Can lung scarring be a cause of infection?
52:30 Could long-covid cause fatigue?
53:08 Can shortness of breath be part of fatigue?
53:56 How do you know if fatigue is from the vasculitis, a person’s age, hyperthyroid, etc.?
54:59 Sometimes my naps last two or more hours. Does this help or hurt in the long run?
55:44 What vitamins interact with meds?
56:31 What does PEM on your exercise slide stand for?
56:47 Can acupuncture help with fatigue?

April 2025

Download the slides from this presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/04/FatigueVFPDF.pdf

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

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Access the guidebook referenced in this webinar as well as additional helpful resources on movement with vasculitis on the physical movement page of the Vasculitis Foundation website
https://vasculitisfoundation.org/living-well/wellness-movement/

Living with pain and stiffness can be challenging, especially when we want to stay active and independent. This informative and supportive presentation is designed to help you maintain movement, activity, and exercise safely and effectively.
In this webinar, Dr. Anne O’Brien, a physiotherapy clinical-specialist and Senior Lecturer at Keele University in the UK discusses the best strategies for managing joint and muscle pain, maintaining joint mobility, and incorporating exercise into daily life. While much of Dr. O’Brien’s research has focused on the importance of maintaining movement and activity for those with polymyalgia rheumatica (PMR); the information is applicable to all forms of vasculitis.

Key Topics Include:
Adapting physical activity to your body’s needs
Safe exercises and stretches to improve mobility
Balancing activity with rest
Impact of exercise on mood

Additional Helpful Resources

 The Vasculitis Foundation website's Physical Wellness page has guides, videos, and more, to help you move safely with vasculitis. https://vasculitisfoundation.org/living-well/wellness-movement/

Working on Wellness Foundation offers free and accessible online fitness options https://www.workingonwellnessfoundation.org

Poster: Exercises to Keep You Moving https://www.versusarthritis.org/media/23932/keep-moving-poster.pdf

The U.S. Department of Health and Human Services has a Move Your Way activity planner to help guide you as you gradually build more activity into your day https://odphp.health.gov/moveyourway/activity-planner

Live in the United States and looking for free, local exercise programs? Your health insurance provider may offer a free gym membership through Silver Sneakers. You can also contact your local senior center or Area Agency on Aging to see what classes are offered in your area.

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Dr. Notas de Koreishi:
• Hacia el principio dije que la pupila es la parte blanca en lugar de "negra".
• Un par de veces dije "tijera" en lugar de "tejido" cuando me refería al tejido del ojo.

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0:00
5:11 Fun facts about the microbiome
6:39 What does your gut microbiome do?
8:30 Microbiome connections
15:15 Diet and the microbiome
15:49 Microbiome and autoimmunity
16:51 Microbiome and vasculitis
18:21 Inflammation of the nose and sinuses
21:02 Unanswered questions
21:45 A unique longitudinal biorepository focused on sinonasal disease
24:00 Focusing on what happens before relapse (pre-relapse)
24:52 Do nasal bacteria change prior to and during relapse of GPA?
26:15 Corynebacteria: an understudied bug
28:42 Molecular changes occurring in nasal tissue observed prior to relapse
31:13 Nasal cells of GPA are different from those of healthy patients
34:00 Long-term goal: unravel the relationships between microbes, sinonasal cells, and the immune system
35:14 Vasculitis Sino-Nasal Indicators For Flares (V-SNIFF) Study
37:07 Misconceptions about the microbiome
40:00 Risks of probiotics
43:31 Q&A

The Microbiome and Vasculitis
March 2025

View the slides from this presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/03/Microbiome_VF_Rhee2025.pdf

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0:00
3:58 What are Lymphocytes?
6:01 Understanding CAR T-Cells.
7:04 How CAR T-Cell therapy works.
9:53 CAR T-Cells approved in cancer.
10:55 The evolution of CAR T-cells.
12:09 CAR vs CAAR-T cells.
14 :36 Pros and cons with CAR-T therapy.
18:37 CAR and CAARs in autoimmune disease.
20:50 Clinical trials.


You can view the presentation slides here: https://vasculitisfoundation.org/wp-content/uploads/2025/03/CAR_T_VF_20250313.pdf

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Link to slide presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/03/Healthy-Hair-Healthy-You.pdf

In this webinar, we explore the connection between vasculitis and hair loss, and share practical, holistic strategies to help restore your hair and support your overall health. Whether you’re struggling with hair thinning, loss, or other scalp issues, you’ll learn with tools to boost hair growth, strengthen your body, and feel more confident in your vasculitis journey.

What You’ll Learn:
*How vasculitis affects hair health and the scalp
*The impact of steroids on hair loss
*Key nutrients and supplements that promote hair regrowth
*Stress management techniques to reduce hair loss
*Scalp care routines for healthier, stronger hair
*Lifestyle changes that can aid in hair restoration and growth

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0:00
2:24 March is Autoimmune Disease Awareness Month
3:14 Test your knowledge! How much do you know about autoimmune diseases?
7:51 Multiple sclerosis and other rare demyelinating diseases
8:40 Neuromyelitis optica spectrum of disorders (NMOSD)
13:32 Stiff person syndrome
15:34 IgG4-related disease
16:44 Cogan’s Syndrome
18:17 Vogt-Koyanagi-Harada Syndrome (VKH)
19:18 Can pain be considered as a rare type of autoimmune disease?
20:03 Antibodies associated with autoimmune pain
20:44 Autoimmune pain
22:00 Take home points!
23:53 Why patients with vasculitis should learn about autoimmunity.
24:32 How are so many rare autoimmune diseases ever diagnosed?
27:06 Could research into autoimmune diseases lead us to find common threads among different
diseases that could lead to treatment?

Autoimmune Diseases
February 2025

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0:00
3:24 Understanding medication access.
4:20 Brands, generics, & branded generics.
5:42 What is a specialty medication?
6:13 What is a biologic vs. a biosimilar?
8:14 Biosimilars vs generic drugs.
10:06 Biosimilar updates.
11:15 Insurance payers.
13:31 Important terms you should know.
14:14 Prior authorization.
20:51 Navigating pharmacy options.
24:03 Patient Support Programs.
26:34 Medicare
28:21 Enrollment Period.
29:03 What is new in Medicare Part D in 2025.
31:47 Online tools and resources.
34:35 Can you give tips on navigating the prior authorization process?
38:22 My medication has been denied. What do I do now?
39:53 Can you explain again what is meant by a manufacturer co-pay card?

Navigating the Medical Access Process
February 2024

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0:00
9:10 The skin and vasculitis
13:52 Case 1
17:00 Case 2
22:21 How rare is UT?
27:42 Treatment
31:40 Hemorrhagic edema of infancy. Cockade purpura.
32:30 There are types of vasculitis that have UT-type legions, but not UT (EGPA)
33:58 With any Vasculitis that affects the skin, is it possible that a limited area will be affected? I have been told to return when I am covered with the issue, instead of several small spots.
36:09 Can you be in remission if you have no symptoms but have vasculitis in your system?
37:12 How does this work with Behcet's and Sjorgrens?
39:23 Can maternal exposure to Rubella cause any of this?
40:22 How rare is UT in black people?
41:39 Is there any evidence that COVID-19 has led to an increase in UT
42:44 Can you discuss the difference between urticaria and panniculitis
45:04 Is it possible that pressure from exercise could cause increased sensitivity with UT
46:10 When GI issues are involved with UT what are the symptoms?
48:08 Do you recommend any topicals or ointments to help maintain UT?
49:36 Is there a connection between UT and Lichen planus
52:58 Can chemo and radiation cause UT
54:16 Do the eruptions that occur with UT every crust or harden. If so could they be surgically removed?

Overview of Urticarial Vasculitis
February 2024

View Dr. Foulke's slide presentation here: https://vasculitisfoundation.org/wp-content/uploads/2025/02/urticarial-vasculitis.pdf

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0:00
4:54 Explanation of Takayasu Arteritis (TAK)
9:09 Diagnosis of TAK
11:47 Classification Criteria of TAK
12:30 Treatment
14:06 Children and TAK
20:45 Pediatric Vasculitis Activity Score 2008
24:26 Challenges in kids
25:36 Prior studies on childhood Takayasu Arteritis
27:32 International Collaboration on Childhood-Onset Takayasu Arteritis
31:56 Childhood Arthritis and Rheumatology Research Alliance (CARRA)
Paediatric Rheumatology European Association (PRES)
34:55: Q: How is the response to treatment monitored in children with TAK?
37:04 Q: What about lab work that’s needed with childhood TAK?
37:59 Q: Has there been an increase in the diagnosis of childhood TAK in recent years?
39:07 Q: Can you talk about some long-term implications of childhood TAK. And, can children with TAK live a normal life?

43:38 Q: Does the treatment change for a patient diagnosed in childhood and as they become adults?
45:10 Q: Do children diagnosed at an early age tend to have more issues from TAK as they get older (as opposed to adults diagnosed with TAK later in life?

Disease Assessment in Pediatric-Onset Takayasu Arteritis
February 20245

Click here to view Dr. Gagne's slide presentation: https://vasculitisfoundation.org/wp-content/uploads/2025/02/VF-Presentation-Evening-Out-the-Score-in-cTAK.pdf

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Explore this guide for helpful links and tips https://vasculitisfoundation.org/wp-content/uploads/2025/01/Working-with-Vasculitis-Resource-Guide.pdf

A panel of people who are living and working with vasculitis share tips and resources. The panel discusses helpful tools for determining when and what to disclose as well as tools for you and your employer that can help you find accommodations that allow you to continue to thrive in your career. The panelists also discuss understanding your rights as an employee with a chronic illness, how to request workplace accommodations to continue your career, strategies for managing fatigue and brain fog, and more . . .

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0:00
3:24 Key questions: Is vasculitis “genetic”? What genetic testing should be sent?
9:28 Design of genetic studies.
10:26 Giant Cell Arteritis genetic study.
13:16 What do the results from this GCA genetic study tell us?
17:27 What is a genetic risk score?
20:59 Takeaways so far.
22:41 Vasculitis as a single gene disease.
24:52 DADA2
27:31 Takeaways
28:42 Vasculitis due to acquired mutations.
29:35 VEXAS
32:22 As we go through life our DNA acquires mutations.
35:06 Takeaways
37:15 Does vasculitis run in families?
42:08 Takeaways
43:20 What genetic testing should be sent?
45:45 Summary
47:48 Q: Where is most of this genetic research happening?
48:41 Q: My husband and his brother both have GPA. Should they be tested?
50:54 Q: Can DADA 2 be related to Factor V Lieden mutation?
51:54 Q: If you develop an autoimmune disease but do not have vasculitis but have a parent with vasculitis, does that autoimmune disease put you at higher risk of developing vasculitis?

Genetics and Vasculitis
Recorded December 2024

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