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Aches, Pains, and Love: Navigating Relationships While Living with Chronic Illness

vasculitisfoundation July 24, 2024 9:21 pm

VF Quick Learn: What is Plasma Exhange?

vasculitisfoundation July 3, 2024 12:47 pm

0:00
6:18          What happens to the body when taking corticosteroids?
8:57          What is adrenal insufficiency?
10:34        Risks.
13:35        Symptoms of corticosteroids.
15:37       Testing:  Basal Cortisol Levels.
16:37       ACTH Stimulation test.
19:11       Adrenal insufficiency vs. prednisone withdrawal.
23:09      Q&A:  What are some symptoms of adrenal insufficiency vs those symptoms for   
                weaning too fast from steroids?
24:48      Q&A:  Is Adrenal Insufficiency inevitable if you reduce prednisone slowly over two  
                 years? At what dosage will it appear?
27:49       Q&A:  If one of the symptoms is fatigue, and fatigue is one of the most common 
                 lingering symptoms of ANCA vasculitis, how can my team determine if I 
                 have adrenal insufficiency without the ATCH test?
32:31      Q&A:  What happens to adrenal glands in the case of a transplant?
33:40      Q&A:  Are there forms of vasculitis that can cause primary adrenal insufficiency?
34:51      Q&A:  If you decrease prednisone to 0 do you always develop adrenal   
                 insufficiency?
36:04      Q&A:  Is a person at risk for adrenal insufficiency while they are reducing and then 
                12 months after stopping completely?
36:40      Q&A: Is there a method that works to reduce steroid dependence because a small    
                reduction causes steroid withdrawal?
39:09     Q&A:  What can patients do as they taper off prednisone to get the adrenal glands to    
               'kick in' and start making sufficient amounts of cortisol again?
41:36     Q&A:  If repeated cortisol tests show the return of cortisol levels to normal levels 
               then there is no longer adrenal insufficiency. Is this correct?
43:20     Q&A:  Can you recover from adrenal insufficiency or can it be a permanent 
               condition?
47:11    Q&A:  What is meant by a “rescue dose”?
47:43    Q&A:  Budesonide is reported as having fewer systemic effects than Prednisone- 
               does it have the same risk of AI?
48:54:    Q&A:  Does advanced age affect the ability to recover from adrenal insufficiency?
49:45     Q&A:  Is DHEA a steroid?

What You Need to Know about Adrenal Insufficiency
Recorded June 2024

If you’re living with vasculitis and on corticosteroid medication, we have what you need to know about adrenal insufficiency. In this webinar, Alexandra Villa-Forte, MD, MPH, FACP, from the Center for Vasculitis Care and Research at the Cleveland Clinic, addresses your most pressing concerns and explain why tapering off corticosteroids needs to be done in a precise way.  Dr. Villa-Forte will discusses how to discern between withdrawal symptoms and adrenal insufficiency, and how to monitor yourself for potential adverse effects during a taper.

0:00
6:18 What happens to the body when taking corticosteroids?
8:57 What is adrenal insufficiency?
10:34 Risks.
13:35 Symptoms of corticosteroids.
15:37 Testing: Basal Cortisol Levels.
16:37 ACTH Stimulation test.
19:11 Adrenal insufficiency vs. prednisone withdrawal.
23:09 Q&A: What are some symptoms of adrenal insufficiency vs those symptoms for
weaning too fast from steroids?
24:48 Q&A: Is Adrenal Insufficiency inevitable if you reduce prednisone slowly over two
years? At what dosage will it appear?
27:49 Q&A: If one of the symptoms is fatigue, and fatigue is one of the most common
lingering symptoms of ANCA vasculitis, how can my team determine if I
have adrenal insufficiency without the ATCH test?
32:31 Q&A: What happens to adrenal glands in the case of a transplant?
33:40 Q&A: Are there forms of vasculitis that can cause primary adrenal insufficiency?
34:51 Q&A: If you decrease prednisone to 0 do you always develop adrenal
insufficiency?
36:04 Q&A: Is a person at risk for adrenal insufficiency while they are reducing and then
12 months after stopping completely?
36:40 Q&A: Is there a method that works to reduce steroid dependence because a small
reduction causes steroid withdrawal?
39:09 Q&A: What can patients do as they taper off prednisone to get the adrenal glands to
'kick in' and start making sufficient amounts of cortisol again?
41:36 Q&A: If repeated cortisol tests show the return of cortisol levels to normal levels
then there is no longer adrenal insufficiency. Is this correct?
43:20 Q&A: Can you recover from adrenal insufficiency or can it be a permanent
condition?
47:11 Q&A: What is meant by a “rescue dose”?
47:43 Q&A: Budesonide is reported as having fewer systemic effects than Prednisone-
does it have the same risk of AI?
48:54: Q&A: Does advanced age affect the ability to recover from adrenal insufficiency?
49:45 Q&A: Is DHEA a steroid?

What You Need to Know about Adrenal Insufficiency
Recorded June 2024

If you’re living with vasculitis and on corticosteroid medication, we have what you need to know about adrenal insufficiency. In this webinar, Alexandra Villa-Forte, MD, MPH, FACP, from the Center for Vasculitis Care and Research at the Cleveland Clinic, addresses your most pressing concerns and explain why tapering off corticosteroids needs to be done in a precise way. Dr. Villa-Forte will discusses how to discern between withdrawal symptoms and adrenal insufficiency, and how to monitor yourself for potential adverse effects during a taper.

26 0

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLlNwa2xmZWtSSExj

2024 Adrenal Insufficiency

vasculitisfoundation June 29, 2024 2:33 pm

Presentation Slides: https://www.vasculitisfoundation.org/wp-content/uploads/2024/06/Grief-Vasculitis.pdf

Living with vasculitis brings not just physical challenges but also deep emotional ones. Noelle Creamer, a Board-Certified Health and Wellness Coach who’s also living with vasculitis, dives into the grief that comes with a vasculitis diagnosis and how it affects more than just our health. She explores what this grief looks like, why it's so hard to talk about, and how we can move forward with hope.

What you will learn in this workshop: 

Understanding Grief’s Many Forms: Gain a deeper insight into the various types of grief one may encounter with a vasculitis diagnosis, including loss of control, loss of trust in one's body, or loss of personal identity, purpose and direction. 

Unveiling Disenfranchised Grief: Discover what disenfranchised grief is and why it's significant, especially when your feelings of loss go unrecognized by society.

Recognizing the Symptoms: Learn to identify the symptoms of disenfranchised grief and understand how they might differ from those of traditional mourning.

Physical Manifestations of Grief: Explore how grief can be embodied, learning to recognize the physical signs and symptoms that grief may be affecting your wellbeing.

Self-Reflection Prompts for Tough Days: Arm yourself with thoughtful questions to guide you through difficult moments, fostering introspection and self-compassion.

Cultivating Self-Care: Learn about practical self-care strategies for challenging days, designed to nurture both body and spirit.

Embracing Your 'MVP': Engage with key practices—Mindfulness, Visualization, and Purpose—as tools to center yourself and find peace amidst the turmoil.

Applying the 3-H's Approach: Determine which type of support you need at any given moment and learn how to communicate these needs to others.

Community and Support: Learn the importance of sharing your story and finding a community that understands and supports you.

About Noelle:

Noelle Creamer is a Board-Certified Health and Wellness Coach with training from Duke University, and the Co-Founder of BrightlyThrive™, a community-based app that supports those living with autoimmune conditions, inspired by Noelle's own victory over Granulomatosis with Polyangiitis. Noelle’s credentials also extend to certifications in breathwork, mind/body connection, lifestyle medicine, nutrition and yoga, enriching her holistic approach to wellness.

Her mission is clear: to empower people to transcend health challenges and live fully today without fearing tomorrow. Noelle specializes in cultivating a positive mindset and building healthy habits in nutrition, exercise, sleep, and community connection. She is a guide, mentor, and advocate for thriving health and wellness.

Presentation Slides: https://www.vasculitisfoundation.org/wp-content/uploads/2024/06/Grief-Vasculitis.pdf

Living with vasculitis brings not just physical challenges but also deep emotional ones. Noelle Creamer, a Board-Certified Health and Wellness Coach who’s also living with vasculitis, dives into the grief that comes with a vasculitis diagnosis and how it affects more than just our health. She explores what this grief looks like, why it's so hard to talk about, and how we can move forward with hope.

What you will learn in this workshop:

Understanding Grief’s Many Forms: Gain a deeper insight into the various types of grief one may encounter with a vasculitis diagnosis, including loss of control, loss of trust in one's body, or loss of personal identity, purpose and direction.

Unveiling Disenfranchised Grief: Discover what disenfranchised grief is and why it's significant, especially when your feelings of loss go unrecognized by society.

Recognizing the Symptoms: Learn to identify the symptoms of disenfranchised grief and understand how they might differ from those of traditional mourning.

Physical Manifestations of Grief: Explore how grief can be embodied, learning to recognize the physical signs and symptoms that grief may be affecting your wellbeing.

Self-Reflection Prompts for Tough Days: Arm yourself with thoughtful questions to guide you through difficult moments, fostering introspection and self-compassion.

Cultivating Self-Care: Learn about practical self-care strategies for challenging days, designed to nurture both body and spirit.

Embracing Your 'MVP': Engage with key practices—Mindfulness, Visualization, and Purpose—as tools to center yourself and find peace amidst the turmoil.

Applying the 3-H's Approach: Determine which type of support you need at any given moment and learn how to communicate these needs to others.

Community and Support: Learn the importance of sharing your story and finding a community that understands and supports you.

About Noelle:

Noelle Creamer is a Board-Certified Health and Wellness Coach with training from Duke University, and the Co-Founder of BrightlyThrive™, a community-based app that supports those living with autoimmune conditions, inspired by Noelle's own victory over Granulomatosis with Polyangiitis. Noelle’s credentials also extend to certifications in breathwork, mind/body connection, lifestyle medicine, nutrition and yoga, enriching her holistic approach to wellness.

Her mission is clear: to empower people to transcend health challenges and live fully today without fearing tomorrow. Noelle specializes in cultivating a positive mindset and building healthy habits in nutrition, exercise, sleep, and community connection. She is a guide, mentor, and advocate for thriving health and wellness.

23 4

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLjFsNkZzb2tkbFhR

Grief and Vasculitis: The Road from Loss to Empowerment

vasculitisfoundation June 19, 2024 1:18 pm

0:00
0:46 Introduction
2:07 My GPA led to permanent hearing loss, however, I don't well understand what 
happened. Are  you able to provide some common reasons for this permanent           
 loss?

6:35 What are your thoughts on less invasive balloon sinuplasty for vasculitis patients?

8:16 Is it common for GPA to start in sinusitis and then that clears and moves to other  
symptoms joint pain and eye pain but no sinusitis?

9:35 How can eustachian tube dysfunction present when GPA is the culprit? Is this a 
common presentation?

11:03 You say to avoid surgery, but in the presence of invasive polyps is that the case? I 
 had two surgeries within 12 weeks for severe presentations of polyps. were they 
 potentially avoidable?

12:41 I use hydropulse nasal irrigation and it is effective.  I had no relief with the 6oz 
 bottle.  Do you recommend hydro pulse?

14:00 How do you know if the crusting and mucus is normal and not inflammation or 
residue from the GPA damage?

15:19 What does a sinus biopsy show when it is positive for vasculitis?

16:55 Once you’re diagnosed and mostly under control, how common is it to develop 
saddle nose?

18:44 Can sinus involvement also affect the teeth or mouth?

19:43 Have you ever dealt with a patient who had sinus involvement with vasculitis and 
they wanted to get a nose ring, or a small metal stud.  If so, how did you advise 
them on risks?

21:50 Can you share the key points that you would tell a patient who has sinus 
involvement?

More Q&A on Sinuses and Vasculitis
Recorded June 2024

0:00
0:46 Introduction
2:07 My GPA led to permanent hearing loss, however, I don't well understand what
happened. Are you able to provide some common reasons for this permanent
loss?

6:35 What are your thoughts on less invasive balloon sinuplasty for vasculitis patients?

8:16 Is it common for GPA to start in sinusitis and then that clears and moves to other
symptoms joint pain and eye pain but no sinusitis?

9:35 How can eustachian tube dysfunction present when GPA is the culprit? Is this a
common presentation?

11:03 You say to avoid surgery, but in the presence of invasive polyps is that the case? I
had two surgeries within 12 weeks for severe presentations of polyps. were they
potentially avoidable?

12:41 I use hydropulse nasal irrigation and it is effective. I had no relief with the 6oz
bottle. Do you recommend hydro pulse?

14:00 How do you know if the crusting and mucus is normal and not inflammation or
residue from the GPA damage?

15:19 What does a sinus biopsy show when it is positive for vasculitis?

16:55 Once you’re diagnosed and mostly under control, how common is it to develop
saddle nose?

18:44 Can sinus involvement also affect the teeth or mouth?

19:43 Have you ever dealt with a patient who had sinus involvement with vasculitis and
they wanted to get a nose ring, or a small metal stud. If so, how did you advise
them on risks?

21:50 Can you share the key points that you would tell a patient who has sinus
involvement?

More Q&A on Sinuses and Vasculitis
Recorded June 2024

23 2

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLjJvb0ZCenhUUk9v

More Q&A on Sinuses and Vasculitis

vasculitisfoundation June 12, 2024 9:09 pm

0:00
0:34 Introducing Dr. Alicia Rodrigue-Pla
1:51 What is EGPA?
4:44 Pathogenesis
8:17 Epidemiology
9:15 Patient case study
10:16 Symptoms
11:31 Phases of EGPA
12:57 ANCA- vs ANCA +
13:57 Diagnosis
16:50 Differentiating features.
18:36 Treatment
19:28 Treatment timeline.
20:45 Treatment:  Refractory disease.
21:00 ACR / VF Guidelines.
23:26 Anti-il5/il5r biologic therapies
25:53 Anti-il-5 therapies in EGPA
26 :43 Mepolizumab (I)
27 :52 Benralizumab (I)
29:33 Phase 2 reslizumab study for EGPA
29:47 Take home messages

31:23      Q: Many of us have no eosinophils b/c of pred, Nucala, etc. but still have flares, or    
                need additional meds to manage the epga. What can cause flares in EGPA when the 
                 EOS are 0?
34:30      Q:  What does DAH mean?
36:28      Q:   What is the youngest patient the doctor has treated for EGPA?
37:23      Q:   Could you tell us again how the drug Mepolizumab could help patients?
39:39      Q:   Have you experience with EGPA patients successfully maintaining remission   
                off all treatments?
41:15       Q:   Are vaccines such as flu, covid, and shingles recommended?
41:53       Q:   Do you know the timeline of approval for the use of bevacizumab to treat 
                  EGPA?  What was the dosing frequency in the study - was it 30 mg every 4 
                  weeks?
43:03        Q:    Is it normal having a lot of surgeries in the sinuses? Every year? And   
                  inflammation in other organs?
44:06        Q:    What percentage of patients develop antibodies to Benralizumab over time?
44:54        Q:    Rituximab was not listed on the IL-5 inhibitor slides.  In addition to B cell 
                    interaction, does Rituximab also inhibit IL-5?
45:39         Q:    How common is neuropathy?
47:23         Q:    How is asthma treated when someone has EGPA?
48:12         Q:    Thoughts about diet and vasculitis?
50:15         Q:     Why is tavneos only for ANCA positive? We cannot use it right?
52:37         Q:     Who should be on my medical team?  Should I have a pulmonologist with 
                   EGPA?

Overview of EGPA
Recorded June 2024

In this webinar, Alicia Rodriguez-Pla, MD, PhD, MPH, a rheumatologist at Sierra Pacific Arthritis and Rheumatology Centers in Fresno, California, helps you to  understand the symptoms, diagnosis, and available treatment strategies for EGPA. She also  review spotential complications from the disease, as well as what’s on the horizon—current research and ongoing clinical studies.

0:00
0:34 Introducing Dr. Alicia Rodrigue-Pla
1:51 What is EGPA?
4:44 Pathogenesis
8:17 Epidemiology
9:15 Patient case study
10:16 Symptoms
11:31 Phases of EGPA
12:57 ANCA- vs ANCA +
13:57 Diagnosis
16:50 Differentiating features.
18:36 Treatment
19:28 Treatment timeline.
20:45 Treatment: Refractory disease.
21:00 ACR / VF Guidelines.
23:26 Anti-il5/il5r biologic therapies
25:53 Anti-il-5 therapies in EGPA
26 :43 Mepolizumab (I)
27 :52 Benralizumab (I)
29:33 Phase 2 reslizumab study for EGPA
29:47 Take home messages

31:23 Q: Many of us have no eosinophils b/c of pred, Nucala, etc. but still have flares, or
need additional meds to manage the epga. What can cause flares in EGPA when the
EOS are 0?
34:30 Q: What does DAH mean?
36:28 Q: What is the youngest patient the doctor has treated for EGPA?
37:23 Q: Could you tell us again how the drug Mepolizumab could help patients?
39:39 Q: Have you experience with EGPA patients successfully maintaining remission
off all treatments?
41:15 Q: Are vaccines such as flu, covid, and shingles recommended?
41:53 Q: Do you know the timeline of approval for the use of bevacizumab to treat
EGPA? What was the dosing frequency in the study - was it 30 mg every 4
weeks?
43:03 Q: Is it normal having a lot of surgeries in the sinuses? Every year? And
inflammation in other organs?
44:06 Q: What percentage of patients develop antibodies to Benralizumab over time?
44:54 Q: Rituximab was not listed on the IL-5 inhibitor slides. In addition to B cell
interaction, does Rituximab also inhibit IL-5?
45:39 Q: How common is neuropathy?
47:23 Q: How is asthma treated when someone has EGPA?
48:12 Q: Thoughts about diet and vasculitis?
50:15 Q: Why is tavneos only for ANCA positive? We cannot use it right?
52:37 Q: Who should be on my medical team? Should I have a pulmonologist with
EGPA?

Overview of EGPA
Recorded June 2024

In this webinar, Alicia Rodriguez-Pla, MD, PhD, MPH, a rheumatologist at Sierra Pacific Arthritis and Rheumatology Centers in Fresno, California, helps you to understand the symptoms, diagnosis, and available treatment strategies for EGPA. She also review spotential complications from the disease, as well as what’s on the horizon—current research and ongoing clinical studies.

20 0

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLnlwVlp5cTlHZ1FR

Overview of EGPA

vasculitisfoundation June 7, 2024 4:34 pm

Renew and Restore: SomaYoga for Fatigue and Exhaustion

vasculitisfoundation June 4, 2024 1:29 pm

0:00
1:13 Introductions.
3:57 Incidence and geographical aspects of Behcet’s Disease.
5:27 The underlying cause of Behcet’s is unknown.
7:32 Behcet’s can affect multiple organ systems.
10:02 Behcet’s is a difficult disease to diagnose.
11:13 Strong elements for the dx of Behcet’s.
13:40 Diagnosis of Behçet’s Disease is often delayed especially in patients 
               with only oral ulcers
15:49 Management of Behcet’s Disease should be tailored to individual patient needs.
18:08 Several factors contribute to impaired quality of life.
19:17 Treatment updates.
21:14 Ashley Pelletier shares her story and talks about American Behcet’s Disease 
          Association (ABDA)
29:51 Q:  Does the age of symptom onset have an impact on prognosis?
31:04 Q:  Could Behcet’s be the cause of my ongoing cardiac issues?
34:09 Q:  What are some of the issues and disparities surrounding African Americans and 
         Behcet’s?
36:40 Q:  Do you have any suggestions on how best to assemble the right team of doctors and 
               specialists for Behcet’s?
40:29 Q: Is it normal for my skin to burn when I shower or bathe?
41:31 Q:  I have skin involvement with my Behcet’s.  Should I take extra precautions when it 
                comes to being in the sun?
42:37 Q: Has the doctor ever heard of something called MAGIC Syndrome?
44:00 Q: I have Behcet’s.  I was diagnosed with HLAB57 and HLAB27.  Have you ever seen a 
                 patient who has been diagnosed with them?
46:08 Q:  Can the doctor discuss non-scarring genital ulcers?
48:33 Q: Are there some diet considerations for patients with vasculitis?  What about certain 
                foods that are painful to eat due to mouth ulcers?
52:50 Q:  Is it safe to use topical steroids on genital ulcers?
54:30: Q: Can the doctor talk about any correlation between flares and their menstrual cycle?

What You Need to Know about Behcet's Disease
Recorded May 2024

 Andrew Sulich, MD, discusses how to identify symptoms, relevant diagnostic tools, and the best ways to treat Behcet’s.
Ashley Pelletier, Executive Director of the American Behcet’s Disease Association (ABDA) and a person living with Behcet’s, shares her personal experience with the illness and how ABDA can be a valuable resource for the Behcet’s community.

0:00
1:13 Introductions.
3:57 Incidence and geographical aspects of Behcet’s Disease.
5:27 The underlying cause of Behcet’s is unknown.
7:32 Behcet’s can affect multiple organ systems.
10:02 Behcet’s is a difficult disease to diagnose.
11:13 Strong elements for the dx of Behcet’s.
13:40 Diagnosis of Behçet’s Disease is often delayed especially in patients
with only oral ulcers
15:49 Management of Behcet’s Disease should be tailored to individual patient needs.
18:08 Several factors contribute to impaired quality of life.
19:17 Treatment updates.
21:14 Ashley Pelletier shares her story and talks about American Behcet’s Disease
Association (ABDA)
29:51 Q: Does the age of symptom onset have an impact on prognosis?
31:04 Q: Could Behcet’s be the cause of my ongoing cardiac issues?
34:09 Q: What are some of the issues and disparities surrounding African Americans and
Behcet’s?
36:40 Q: Do you have any suggestions on how best to assemble the right team of doctors and
specialists for Behcet’s?
40:29 Q: Is it normal for my skin to burn when I shower or bathe?
41:31 Q: I have skin involvement with my Behcet’s. Should I take extra precautions when it
comes to being in the sun?
42:37 Q: Has the doctor ever heard of something called MAGIC Syndrome?
44:00 Q: I have Behcet’s. I was diagnosed with HLAB57 and HLAB27. Have you ever seen a
patient who has been diagnosed with them?
46:08 Q: Can the doctor discuss non-scarring genital ulcers?
48:33 Q: Are there some diet considerations for patients with vasculitis? What about certain
foods that are painful to eat due to mouth ulcers?
52:50 Q: Is it safe to use topical steroids on genital ulcers?
54:30: Q: Can the doctor talk about any correlation between flares and their menstrual cycle?

What You Need to Know about Behcet's Disease
Recorded May 2024

Andrew Sulich, MD, discusses how to identify symptoms, relevant diagnostic tools, and the best ways to treat Behcet’s.
Ashley Pelletier, Executive Director of the American Behcet’s Disease Association (ABDA) and a person living with Behcet’s, shares her personal experience with the illness and how ABDA can be a valuable resource for the Behcet’s community.

25 0

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLkcwZGtLT0d1TmRB

What you need to know about Behcet's Disease

vasculitisfoundation May 22, 2024 6:27 pm

The VF Vasculitis Quiz

vasculitisfoundation May 15, 2024 12:22 am

0:00
0:42 Introducing Dr. Sebastian Sattui.
1:32 Why this meeting is so important.
3:06 The MANDARA Clinical Trial
3:46 The TAPIR Study
5:07 Honoring Dr. Ronald Falk
6:29 Using renal biopsy info or urinary markers to predict how treatments will go for
               renal function.
6:59 Results from the VascStrong Study.
9:21 Presentation on AVOCOPAN. 
11:25 Excitement around the new response criteria being developed around ANCA vasculitis.
12:23 Focusing on multi-disciplinary care.
14:29 Joyce Kullman: The International Patient Meeting. 
16:47 Translating educational materials into other languages.
17:36 Q: Were there any sessions dealing with treatment for PAN?
20:07 Q:  Was there a discussion about revisions to the use and timetable with steroids?
22:06 Q:  Could you give some more detail about the MANDARA study?
24:48 Q:  What would you suggest so that our doctors and medical providers get the information 
                that you are sharing today.
27:32 Q:  Was there any discussion about the use of artificial intelligence technology in vasculitis 
               research?

2024 Barcelona Vasculitis Workshop: Research Highlights
Recorded May 2024

More than 900 medical professionals from 50 countries came together in Barcelona last month for the 21st International Vasculitis Workshop. Their purpose was to focus on vasculitis and related disorders. 
In this webinar, Sebastian Sattui, MD, MS, Director of the UPMC Vasculitis Center in Pittsburgh, shares some of the notable research news, developments, and promising developments presented at the meeting.

 Among the studies he discusses: 
·       MANDARA Study (benralizumab vs mepolizumab) for EGPA
·       New data (real life and post hoc analyses) about the efficacy and tolerance of avacopan in AAV

0:00
0:42 Introducing Dr. Sebastian Sattui.
1:32 Why this meeting is so important.
3:06 The MANDARA Clinical Trial
3:46 The TAPIR Study
5:07 Honoring Dr. Ronald Falk
6:29 Using renal biopsy info or urinary markers to predict how treatments will go for
renal function.
6:59 Results from the VascStrong Study.
9:21 Presentation on AVOCOPAN.
11:25 Excitement around the new response criteria being developed around ANCA vasculitis.
12:23 Focusing on multi-disciplinary care.
14:29 Joyce Kullman: The International Patient Meeting.
16:47 Translating educational materials into other languages.
17:36 Q: Were there any sessions dealing with treatment for PAN?
20:07 Q: Was there a discussion about revisions to the use and timetable with steroids?
22:06 Q: Could you give some more detail about the MANDARA study?
24:48 Q: What would you suggest so that our doctors and medical providers get the information
that you are sharing today.
27:32 Q: Was there any discussion about the use of artificial intelligence technology in vasculitis
research?

2024 Barcelona Vasculitis Workshop: Research Highlights
Recorded May 2024

More than 900 medical professionals from 50 countries came together in Barcelona last month for the 21st International Vasculitis Workshop. Their purpose was to focus on vasculitis and related disorders.
In this webinar, Sebastian Sattui, MD, MS, Director of the UPMC Vasculitis Center in Pittsburgh, shares some of the notable research news, developments, and promising developments presented at the meeting.

Among the studies he discusses:
· MANDARA Study (benralizumab vs mepolizumab) for EGPA
· New data (real life and post hoc analyses) about the efficacy and tolerance of avacopan in AAV

18 2

YouTube Video VVVlTHM5Vlp2SERIS3JjSGJmbnhZY1lnLkZOU1d6MDBHVGpV

2024 Barcelona Vasculitis Workshop: Research Highlights

vasculitisfoundation May 10, 2024 5:05 pm

Highlights from the 2024 Patient Meeting in Barcelona

vasculitisfoundation May 9, 2024 2:42 pm