Videos

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Do you know what palliative care is and how it might benefit people with vasculitis? In this virtual presentation with Michael Goodblatt, MD & Kimberly Brown Rechner, RN, you’ll learn about the medical specialty called palliative care, and how it can give you an extra level of support and improve your quality of life.

Additional Resources
Palliative Care: A State Resource Guide https://nashp.org/palliative-care-a-state-resource-guide/
Palliative Care Provider Directory https://getpalliativecare.org/provider-directory/
Getpalliativecare.org https://getpalliativecare.org/

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3:58 Key features of EGPA
5:41 A few words about eosinophils
9:10 Typical stepwise disease progression
9:58 Management of EGPA before eosinophil-targeting Tx
14:52 What is Benralizumab?
15:55 MANDARA Study Design
20:00 Asthma remission: an exploratory analysis
24:11 Heatmap of Glucocorticoid dose over time
25:14 What does BENRALIZUMAB do?
26:37 Are there side effects?
27:36 Practically speaking.
29:04 Among patients with EGPA who is eligible?
30:34 The future of benralizumab: ongoing studies
31:09 Take-home messages
33:39 Q: Is it common to switch between Fasenra and other biologics in the course of EGPA?
35:36 Q: Could you please clarify what eosinophils are?
37:01 Q: How quickly do patients typically see improvement in symptoms after starting FASENRA?
41:07 Q: What are the side effects? Is joint pain common?
45:42 Q: How does a patient's ANCA status affect the decision to use FASENRA?
48:23 Q: Are there any long-term safety concerns with FASENRA use?
50:09 Q: Is FASENRA safe to use during pregnancy or breastfeeding?
52:13 Q: Is the drug approved in Belgium? Could you explain how that works?

What you need to know about Benralizumab for treating EGPA
June 2025

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1:45 What is tocilizumab?
3:46 The GiACTA Study
6:48 2021 ACR/VF guideline for management
7:08 Studies in Takayasu
8:56 2021 ACR/VF Guidelines
9:19 Tocilizumab specifics
10:33 Possible side effects and risks
12:13 Who should use caution with this medication
12:53 What has been learned about tocilizumab

What you need to know about Actemra
June 2025

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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
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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May is Vasculitis Awareness Month! Joshua Roberts' remarkable journey embodies the transformative power of connections through the Vasculitis Foundation's support programs and educational resources.

Learn more about Vasculitis Awareness Month and ways you can help create life-changing connections by visiting https://www.vasculitisfoundation.org/living-well/raise-awareness/!

Help us connect more patients to expert care, peer support, and vital resources by donating today at https://vasculitisfoundation.org/ways-to-give/make-a-donation/.

Thank you to our #VAM2025 sponsors: Amgen and AstraZeneca

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The VF’s Community Heroes program uplifts people living with or loving someone with vasculitis. The 2025 heroes embody resilience, courage and determination. Additionally, many are champions in the vasculitis community. These stories are designed to raise vasculitis awareness around the globe.

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The VF’s Community Heroes program uplifts people living with or loving someone with vasculitis. The 2025 heroes embody resilience, courage and determination. Additionally, many are champions in the vasculitis community. These stories are designed to raise vasculitis awareness around the globe.

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The VF’s Community Heroes program uplifts people living with or loving someone with vasculitis. The 2025 heroes embody resilience, courage and determination. Additionally, many are champions in the vasculitis community. These stories are designed to raise vasculitis awareness around the globe.

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The VF’s Community Heroes program uplifts people living with or loving someone with vasculitis. The 2025 heroes embody resilience, courage and determination. Additionally, many are champions in the vasculitis community. These stories are designed to raise vasculitis awareness around the globe.

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The VF’s Community Heroes program uplifts people living with or loving someone with vasculitis. The 2025 heroes embody resilience, courage and determination. Additionally, many are champions in the vasculitis community. These stories are designed to raise vasculitis awareness around the globe.

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The VF’s Community Heroes program uplifts people living with or loving someone with vasculitis. The 2025 heroes embody resilience, courage and determination. Additionally, many are champions in the vasculitis community. These stories are designed to raise vasculitis awareness around the globe.

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The VF’s Community Heroes program uplifts people living with or loving someone with vasculitis. The 2025 heroes embody resilience, courage and determination. Additionally, many are champions in the vasculitis community. These stories are designed to raise vasculitis awareness around the globe.

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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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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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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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