Vasculitis Foundation

Meet Cheryl, who’s living with vasculitis in Pretoria, South Africa.

“In January, I checked an item off my bucket list and hiked to the top of the Hollywood sign. It was a perfect day for it and the view was beautiful. Now, in the last couple of months, I have been hospitalized twice with pneumonia and am currently at home on oxygen. My vasculitis flare has complicated my recovery. This disease has taught me to enjoy the good days and to do what I can on those days because you never know what the next day will bring.”
—Kristi

“Despite being exhausted all the time, my victory is accepting my disease, going to work every day, traveling under safe circumstances, and volunteering as a High School Band parent. It may not be the life I envisioned, but I’m living it with grace.”
—Melanie, living with GPA

DC metro area, let's get together! Join us for our one day, in-person vasculitis conference in Rosslyn, VA. This jam-packed day will feature engaging and informative presentations from medical experts and researchers; educational breakout sessions on pediatric vasculitis, living well with vasculitis, and more; as well as chances to connect with other people who, like you, get what it is like to live with vasculitis or love someone with vasculitis.

Whether you are newly diagnosed with vasculitis or have been navigating a vasculitis diagnosis for years, you will find opportunities to learn, engage, and be empowered.

Saturday, September 14. Register now: https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/learn-engage-empower-washington-dc-4a3wTV2YGv/overview?utm_source=facebook&utm_medium=social&utm_content=ap_hgsxjnqiih

A special thanks to our title sponsor, Amgen, for helping to make this conference possible!

“One of my biggest challenges has been trying to remember that my life goals are going to have to be flexible. This doesn’t mean I’ve ‘given up’ or been ‘unsuccessful’ and I don’t have to let it define my opinion of who I am—but I am going to have to learn to let go of the things that don’t serve me anymore.”
-Robyn, living with vasculitis

Ernesto, who’s been living with vasculitis for nearly two years, has decided that the best way through it is with love. This doesn’t mean vasculitis is easy or that he’d wish it upon anyone. But he has found ways to live with peace of mind in spite of his disease. Here’s his story: https://www.vasculitisfoundation.org/conquering-vasculitis-with-love/?utm_source=facebook&utm_medium=social&utm_content=ap_gk69ci6gfq

Living with EGPA? You can make a difference by participating in valuable research. The OCEAN clinical research study is looking for participants 18 years of age or older with EGPA. Learn more: https://gskoceanclinicaltrial.com/?utm_source=facebook&utm_medium=social&utm_content=ap_ghis94tq9x

“When I got the news about having Behcet's, a rare type of vasculitis, my mind was spinning. It wasn't what I expected at all. Living with this illness feels like constantly walking on shifting sands. You never know what the next moment might bring. And because it's so uncommon, it often gets misdiagnosed for months or even years, which can lead to serious organ damage.

“It took me over a decade to finally get a proper diagnosis. And while there's no magic cure for vasculitis, there are treatments available. But they come with their own set of challenges – like nausea, fatigue, and even hair loss. I've been through seven months of chemotherapy, only to face even more complications.

“But the hardest part? It's finding the right treatment that works before things get really serious. And with the number of people living with vasculitis on the rise, support is more important than ever. That's where the Vasculitis Foundation (VF) comes in. They've been my lifeline through all of this – providing support, education, and funding for research into better treatments and, hopefully, a cure.”
—Jennifer

Parenting a child or teen with vasculitis can feel isolating and like you’re swirling in a haze of uncertainty. You probably have many questions. This 30-minute webinar is an opportunity to ask those questions of a doctor specializing in pediatric vasculitis.

Monday, July 22 at 3pm CT: https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/qanda-webinar-pediatric-vasculitis-4a3wTV3cjt/overview

Managing chronic pain and illness is difficult on the best of days, but when you find yourself facing these challenges within a relationship, it often makes things even harder. Not only are you having to manage your symptoms, but your partner is also having to learn and adjust as well. This can result in feelings of guilt, fear, resentment, and uncertainty for both parties. If you are having a hard time navigating the impact of your pain and illness on your relationship, join Kira Lynne, a clinical counselor and someone who has lived with chronic pain and illness for many years, as she shares information and skills to help you support your relationship in these difficult times.

Wednesday, July 24 at 12pm CT: https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/navigating-relationships-4a3wTV2J3N/overview?utm_source=facebook&utm_medium=social&utm_content=ap_geeirxcdhx

Cleveland, let's get together! Join us for our one day, in-person vasculitis conference in Warrensville, Ohio. This jam-packed day will feature engaging and informative presentations from medical experts and researchers, and educational breakout sessions on living well with vasculitis and more. This is your chance to connect with others who get what it’s like to live or love someone with vasculitis.

Whether you are newly diagnosed with vasculitis or have been navigating a vasculitis diagnosis for years, you will find opportunities to learn, engage, and be empowered.

Main session and breakout sessions include:
Small Vessel Vasculitis; Large Vessel Vasculitis; Experienced Patients; Newly diagnosed Patients; Pediatric & Young Adult Patients and Families; Kidney Health; Nervous System Regulation; Electronic Communication with Your Doctor; Vaccine Side Effects; Quality of Life; What’s New in Vasculitis Research

Saturday, August 10. Register now:https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/learn-engage-empower-cleveland-ohio-4a3wTV250P/overview?utm_source=facebook&utm_medium=social&utm_content=ap_mrkhbin3cx

A special thanks to Amgen for helping to make this conference possible!

The VPPRN 6-month check-in forms are here! Come join the party—check-in and tell us how you are doing.

10 minutes is all it takes! Simply log in to your Vasculitis Patient-Powered Research Network (VPPRN) account and update us on your health: http://www.vpprn.org/login.?utm_source=facebook&utm_medium=social&utm_content=ap_jyquncq3bm Tell us about any changes to your health over the past 6 months.

Providing data to the VPPRN is vital. Patient data allows the VPPRN to do more research on vasculitis. The more data we have, the more answers we can find.

Help us find answers to questions that matter most to you! Complete your VPPRN 6-month check-in forms today!

Not a member of the VPPRN community, but want to join? Fantastic! Learn more: www.vpprn.org.

“My name is Lori Rath and I have vasculitis. I live in Edmond, Oklahoma. My husband Lance is my support and my strength. Without him, this disease would be even more of a challenge.”

Pets make even the hardest days better. Meet Anne and her furry friend in Greensburg, PA.

We created this Get Empowered Resource Guide to ensure that new patients and healthcare providers know what resources the Vasculitis Foundation has for people with vasculitis. The more you know, the better prepared you are to advocate and make informed healthcare decisions for you or your loved one.

This guide will be available in our new patient Empowerment Kits, launching this fall, as well as at various conferences.

Thanks to Amgen for helping make this guide possible.https://www.vasculitisfoundation.org/wp-content/uploads/2024/06/2024-Patient-Resource-Guide-4x4-WEB.pdf

Go, Parker! Parker, who’s living with PAN vasculitis, said his victory over his disease is being able to play sports, even during a flare.

Visiting an emergency room can be a stressful experience. When you’re a patient with a rare disease like vasculitis, it can be even more challenging. As both a retired ER physician and the mother of a young adult with vasculitis, Susan Wilson, MD, CPC, has a unique perspective.

In this webinar, Dr. Wilson will discuss how her roles as a parent and medical professional within the high-pressure ER world taught her valuable lessons on how to make the experience better for both the patient and medical staff.

Wednesday, July 17 at 3pm CT: https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/the-emergency-room-what-patients-with-vasculitis-need-to-know-4a3wTV47Cb/overview?utm_source=facebook&utm_medium=social&utm_content=ap_mpce8rkbsf

Submit your questions today!
Cassy Sims, MD, a rheumatologist at Duke Health; Heather Tam, a patient advocate and mother living with vasculitis; and Kayden Carter, a father with vasculitis, will be talking about parenting with vasculitis in an upcoming webinar. They want to hear YOUR questions so they can share the information that’s most important to you. Submit your questions in the comments or by sending us a private message.

For Jackie, there is life beyond vasculitis. Eight years after her diagnosis, she is in remission and got the chance to ski with her grandson earlier this year!

Join our friends at the EveryLife Foundation for Rare Diseases for an empowering workshop for artists with rare diseases, including vasculitis, on Wednesday, July 17 from 2-3pm ET. This is your chance to gain insights into how art intersects with body, mind, and spirit amid the challenges of rare diseases, and to access valuable resources on assistive technology and adaptive art techniques.

Register now: https://everylifefoundation.org/rare-artist/?utm_source=facebook&utm_medium=social&utm_content=ap_eesf2ajvva

People are living with vasculitis all around the globe. Meet Suzanne in Homer, Alaska!

Austin, let's get together! Join us for our one day, in-person vasculitis conference in Austin, TX. This jam-packed day will feature engaging and informative presentations from medical experts and researchers; educational breakout sessions on pediatric vasculitis, living well with vasculitis, and more; as well as chances to connect with other people who, like you, get what it is like to live with vasculitis or love someone with vasculitis.

Whether you are newly diagnosed with vasculitis or have been navigating a vasculitis diagnosis for years, you will find opportunities to learn, engage, and be empowered.

Saturday, September 7. Register now: https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/learn-engage-empower-austin-texas-4a3wTV2YC5/overview?utm_source=facebook&utm_medium=social&utm_content=ap_i4kmmdj3ua

A special thanks to our title sponsor, Amgen, for helping to make this conference possible!

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Austin, juntémonos! Acompáñenos, un día entero, en persona, a la conferencia de vasculitis en Austin, TX. Sera un día completo con sesiones informativas e interesantes impartidas por investigadores y expertos en medicina, sesiones educativas sobre vasculitis pediátrico, impartido en salas pequeñas, vivir bien con vasculitis, y más; además, habrá oportunidades de conocer a gente que, como usted, entienden lo que es vivir con vasculitis o lo que es tener a un ser querido con vasculitis.

Ya sea que fue diagnosticado recientemente, o que ha vivido con vasculitis por muchos años, encontrará oportunidades de aprender, participar, y ser empoderado. Se traducirán las lecturas de inglés a español en esta conferencia.

Sábado, 7 de septiembre. ¡Regístrese hoy!

Muchas gracias a nuestro patrocinador, Amgen, ¡por hacer posible esta conferencia!

We all know that if you or someone you love is living with vasculitis, it can be challenging. And finding connections with others who have been in your shoes can be just as tough. That's why we've partnered with Inspire to create a safe, empowering online community where you can find the peer support you or a loved one need when you need it most.

Join for free now: https://www.inspire.com/groups/vasculitis-voices/?utm_source=facebook&utm_medium=social&utm_content=ap_gowfuquicn

The PEXIVAS Trial was a randomized controlled trial conducted in sixteen countries involving 704 patients with ANCA-associated vasculitis. Mike Putman, MD, tackles this clinically complex study and breaks it down with simplicity and humor for a non-medical audience. You will learn why the PEXIVAS study has—in Dr. Putman’s view, “..changed the landscape of ANCA-associated vasculitis.” Watch now.

Overview of the PEXIVAS Study 0:000:28 Introducing Dr. Mike Putman2:07 Explaining the PEXIVAS Trial3:12 What is a Randomized Controlled Trial (RCT)?6:16 What is plasma...

Join us for our Teen Chat on Monday night!

"The teenage experience is challenging as it is trying to balance home life, school, friends, work, sports, etc., but battling a chronic illness on top of that is incredibly difficult. Hanging out with friends and sports practice quickly turned into countless appointments, blood draws, medications, and flare days. Being given the opportunity to connect with other teenagers who are going through the exact same thing has been invaluable! We are able to have the space to vent about our conditions, bounce suggestions/tips off of each other, and connect with people our own age that don’t bat an eye at medical talk! It has truly been such a relief and motivation to continue fighting!"
—Kori, teen living with vasculitis

Monday, July 8 at 7pm CT: https://www.vasculitisfoundation.org/find-support/

Living with EGPA? You can make a difference by participating in valuable research. The OCEAN clinical research study is looking for participants 18 years of age or older with EGPA. Learn more: https://gskoceanclinicaltrial.com/?utm_source=facebook&utm_medium=social&utm_content=ap_yfceovpzfl

Erin has a loving support system! She told us, “My husband has been to every appointment with me, and is my rock who’s constantly supporting me in every way. My daughter is in college and she checks in as she can. My sister and parents are always here for me helping in any way possible! And my nephew and niece really know how to brighten my bad days.”

Chronic pain and illness can be lonely and isolating, particularly if you’re not in a relationship. It may be overwhelming to contemplate how to meet someone and form an intimate connection. If you are wondering if it’s possible to date while living with chronic health conditions like vasculitis and how to go about it, join Kira Lynne, a clinical counselor and someone who has lived with chronic pain and illness for many years, as she talks about the ins and outs and the up and downs of dating with what are oftentimes debilitating health conditions.

Wednesday, July 10 at 12pm CT: https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/dating-while-living-with-chronic-illness-4a3wTV2J1l/overview?utm_source=facebook&utm_medium=social&utm_content=ap_xgd696oqd6

“GPA took all of the hearing in my left ear and most in the right ear. I have a left cochlear implant and a right hearing aid. I don't think music will ever sound good again but I love Queen and try to listen.”
—person with vasculitis

“My victory over vasculitis is enjoying each day and living with grace and gratitude for my blessings.”
—Jeanne