Videos

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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

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Nuevas terapias en GCA y Takayasu Arteritis
New Therapies in GCA and Takayasu Arteritis

Presented by: Maria C. Cid, MD, PhD, Hospital Clínic, Institute of Biomedical Research, Barcelona

The 2024 International Patient Conference Barcelona, Spain, April 6, 2024

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Welcome and Introduction to the 2024 International Patient Conference Barcelona
Bienvenida y presentaciones
Viajes de pacientes


Presented by: Joyce Kullman, Executive Director, Vasculitis Foundation; Maria C. Cid, MD, PhD
Hospital Clínic, Institute of Biomedical Research, Barcelona,
Keynote presentation: Patient Journeys, by Carmen Moreno Herencia, President, AEVASI

The 2024 International Patient Conference Barcelona, Spain, April 6, 2024

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Managing Steroid Toxicity
Manejo de la toxicidad de los esteroides

Presented by: Luis Felipe Flores-Suárez, MD, PhD Primary Systemic Vasculi􀀁des Clinic Ins􀀁tuto Nacional de Enfermedades Respiratorias Mexico City, Mexico

The 2024 International Patient Conference Barcelona, Spain, April 6, 2024

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The VPPRN Registry
¿Qué son los registros de pacientes y por qué son importantes y cómo pueden participar los pacientes?

Presented by: Jenn Gordon, PhD

The 2024 International Patient Conference Barcelona, Spain, April 6, 2024

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Exciting Research Advances on the Horizon_Barcelona 2024
Presented by: Peter A. Merkel, MD, MPH, and Richard Kitching, MD, PhD

The 2024 International Patient Conference
Barcelona, Spain
April 6, 2024

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Patient Registries: FairVas

Presented by: Julie Power, Vasculi􀀁s Ireland

The 2024 International Patient Conference Barcelona, Spain, April 6, 2024

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Quality of Life for Patients with Vasculitis
VascStrength (VascStrong) y Calidad de Vida

Presented by: Sebastian Eduardo Sattui, MD, MS, UPMC Vasculitis Center of Excellence

The 2024 International Patient Conference Barcelona, Spain, April 6, 2024

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Patient Registries: REVAS

Presented by: Roser Solans-Laque, MD, PhD

The 2024 International Patient Conference Barcelona, Spain, April 6, 2024

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Impact of steroids and having a rare rheumatic disease on quality of life
Impacto de los esteroides y tener una enfermedad reumática rara en la calidad de vida

Presented by: Joanna C Robson, PhD, FRCP
Associate Professor in Rheumatology, Centre for Health and Clinical Research, University of the West of England, Bristol

The 2024 International Patient Conference Barcelona, Spain April 6, 2024

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VascStrength (VascStrong) and Quality of Life
VascStrength (VascStrong) y Calidad de Vida

Presented by: Sebastian Eduardo Sattui, MD, MS, UPMC Vasculitis Center of Excellence

The 2024 International Patient Conference Barcelona, Spain, April 6, 2024

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New Therapies for EGPA
Presented by: Georgina Espígol-Frigolé, MD
Hospital Clínic, Institute of Biomedical Research, Barcelona

The 2024 International Patient Conference
Barcelona, Spain
April 6, 2024

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New Therapies in GPA and MPA

Presented by:
Juliana Bordignon Draibe, MD, PhD, Nephrology Department of Hospital de Bellvitge

The 2024 International Patient Conference Barcelona, Spain April 6, 2024

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What are clinical trials and why are they important and how can patients participate?

Presented by: Allyson Egan, BSc(Hons),MRCP, Consultant Nephrologist | Trinity Health Kidney Centre, Tallaght University Hospital, Dublin

The 2024 International Patient Conference Barcelona, Spain, April 6, 2024

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0:00

1:10 Introducing Dr. Free

2:29 Your presentation had a new abbreviation, LTROT. My understanding is this is a goal of
getting the patient is totally off treatment in a state of remission. Is this correct?

5:21: Dr. Free, can you talk about what is meant by immunological remission? Is this the same
idea as achieving any type of remission from vasculitis, or is this a specific type of
remission? Thank you.

7:55 Could you give a layperson explanation of dendritic cells and their purpose? What is the
important takeaway from this process as it pertains to vasculitis?

11:46 You talk about the ultimate goal of restoration of immune system intolerance. A resetting or
redirecting of the immune system. At first, I thought this was the same as finding a cure
where the immune system is restored. Then it seemed like it’s not what we think of as a
cure per se, but to achieve remission. But I’m still confused. Can you elaborate, please?

14:35 Suddenly I’m hearing a lot about CAR and CAAR-T cells. Several doctors have said it’s too
early, too premature …but they didn’t say too premature for what exactly. Do they mean this
research is too premature to provide possible therapeutic options?

19:36 We are hearing about all of the potential, promising therapies. Could you doctor address how
and why it takes so long for these therapies to become approved, new treatments for
patients.

Recorded April 2024

Watch Dr. Free's entire presentation, Emerging Therapies, from the VF Chapel Hill Conference: https://youtu.be/NjAzb6lcVW4

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The VF’s Community Heroes program uplifts people living with or loving someone with vasculitis. The 2024 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 2024 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 2024 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 2024 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 2024 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 2024 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 2024 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 2024 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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