Vasculitis Awareness Month - Vasculitis Foundation

You Are the Reason This Community Exists

May is Vasculitis Awareness Month — a time to raise awareness, share stories, and ensure no one faces vasculitis alone.

This year, we celebrate the Vasculitis Foundation’s 40th anniversary — four decades of progress, connection, and lives transformed.

What began as a small group has grown into a global community helping patients find answers, access expert care, and feel supported every step of the way.

This year’s Community Heroes represent the power of that mission — patients, care partners, researchers, and advocates who are changing lives every day.

Your support helps power what comes next.

Read our full Spring Appeal letter.

Will you make a gift to support the next 40 years?

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Jessica Bloom, MD, MSCS

Pediatric Rheumatologist, Co-Founder of the Pediatric Vasculitis Research Registry within the Vasculitis Patient-Powered Research Network (pedsVPPRN)

Jessica Bloom, MD

Dr. Jessica Bloom is advancing care and research for children and teenagers with vasculitis, improving outcomes for patients and families. As lead investigator of the first pediatric registry within the VPPRN, she is helping shape a stronger future for the next generation.

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Dana DeMoulin

Vasculitis Foundation Support Group Facilitator

Dana DeMoulin

Dana DeMoulin leads the Vasculitis Foundation’s support community, creating safe spaces where patients and care partners feel understood and supported. Through more than 240 annual support groups, she helps people navigate diagnosis and find connection, strength, and hope.

Woman with short light brown hair wearing a black blazer, facing forward against a plain light background.

Jennifer Gordon, PhD

Researcher, VPPRN Co-Investigator, Diagnosed with Eosinophilic Granulomatosis with Polyangiitis (EGPA)

Jennifer Gordon, PhD

Dr. Jennifer Gordon is a leader in vasculitis research and a co-investigator of the VPPRN, helping ensure patient voices guide discovery. As both a researcher and a patient living with EGPA, she advances awareness, advocacy, and connection across the global community.

Smiling woman wearing a baseball cap and sunglasses on her head, outdoors at a field on a sunny day.

Megan Madison

Dedicated Advocate, Diagnosed with Granulomatosis with Polyangiitis (GPA)

Megan Madison

Megan Madison has turned her journey with vasculitis into advocacy, raising awareness and supporting others facing diagnosis and treatment. Through fundraising and storytelling, she helps others feel less alone while building connection and strength within her local community.

Smiling older man with gray hair wearing a white shirt, standing in front of a brick wall.

Don Nagle

Former VF Board Member, Parent of a Vasculitis Patient

Don Nagle

Don Nagle’s commitment to the Vasculitis Foundation and the VPPRN has helped advance patient-driven research and expand a global registry of more than 5,000 participants. His leadership and generosity have strengthened the Foundation’s long-term stability and future impact.

Take Action. Make a Difference.

Make a Gift

Support research, care,
and community.

Shop 40th Anniversary Gear

Wear hope. Spread awareness.
Additional styles available.

Start a Fundraiser and Promote on Social

Turn your voice into impact for the vasculitis community.

Celebrate Community Heroes

Hear their stories and share their impact.

Make Your Voice Heard

One email can make a difference. Fill in your details and send.

Educate. Empower. Inspire.

Educational Videos

Watch. Learn.

Share.

Support Groups

Connect. Ask.

Grow.

Register for Symposium

Join us in Denver this summer.

Read V-BOLD Impact Report

See the impact.

Fuel what’s next.

Health Equity in Vasculitis

Advancing access to healthcare.

Amgen's ANCA Resource Hub

Your place for tools and support.

Your Support Changes Lives

Patients are still waiting too long for answers. Families are still searching for expert care. Researchers are still working toward better treatments — and a cure. Will you make a gift to support our next 40 years?

Thank You to Our 2026 Vasculitis Awareness Month Sponsor

Our Community is Spreading Awareness.

Show us how YOU are spreading awareness.

Post on Facebook or Instagram and tag @VasculitisFoundation with the hashtag #VAM2026

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40 years supporting the vasculitis community
Free Resources • Support Groups • Education
⬇️ Show your support + learn more

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Nov 14

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If you’re living with vasculitis, you know it’s about so much more than a diagnosis. It shapes how you plan your days, show up at work, and connect with the people you love. Join us for the Vasculitis Community Forum: Patient Perspectives, a national virtual listening session where patients, caregivers, and clinicians share lived experiences with those who make treatment decisions, including regulators at the FDA.📅 Friday, November 20, 2026🕛 12:00 to 2:00 PM ET💻 VirtualThe focus: the urgent need for safer, more effective alternatives to steroids, and the real-world impact of current therapies.Register at the link in our bio.

If you’re living with vasculitis, you know it’s about so much more than a diagnosis. It shapes how you plan your days, show up at work, and connect with the people you love.

Join us for the Vasculitis Community Forum: Patient Perspectives, a national virtual listening session where patients, caregivers, and clinicians share lived experiences with those who make treatment decisions, including regulators at the FDA.

📅 Friday, November 20, 2026
🕛 12:00 to 2:00 PM ET
💻 Virtual

The focus: the urgent need for safer, more effective alternatives to steroids, and the real-world impact of current therapies.

Register at the link in our bio.

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Nov 13

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What a weekend at ACR26! 💚This past weekend, the Vasculitis Foundation joined rheumatology leaders, researchers, and clinicians at ACR Convergence 2026 to connect, learn, and share our commitment to improving care for people living with vasculitis.From conversations about the latest advancements in vasculitis research and treatment to sharing valuable patient resources with healthcare professionals, it was an exciting opportunity to help bridge the gap between research and patient care.We’re bringing back new insights, meaningful connections, and plenty to share with our community!

What a weekend at ACR26! 💚

This past weekend, the Vasculitis Foundation joined rheumatology leaders, researchers, and clinicians at ACR Convergence 2026 to connect, learn, and share our commitment to improving care for people living with vasculitis.

From conversations about the latest advancements in vasculitis research and treatment to sharing valuable patient resources with healthcare professionals, it was an exciting opportunity to help bridge the gap between research and patient care.

We’re bringing back new insights, meaningful connections, and plenty to share with our community!

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Nov 13

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Lucy waited 3 years for a diagnosis. She searched medical textbooks alone, dismissed by doctors who told her symptoms were "just stress." When she finally had stroke symptoms, she was told she was "too young to have a stroke.”Today, progress for vasculitis has been made. Earlier disease recognition, a thriving community, more treatment options than Lucy ever had. But we still have work to do. No one should wait months or years for answers.Support the VF at the link in bio

Lucy waited 3 years for a diagnosis. She searched medical textbooks alone, dismissed by doctors who told her symptoms were "just stress."

When she finally had stroke symptoms, she was told she was "too young to have a stroke.”

Today, progress for vasculitis has been made. Earlier disease recognition, a thriving community, more treatment options than Lucy ever had.

But we still have work to do. No one should wait months or years for answers.

Support the VF at the link in bio

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Nov 12

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Most people don’t fully understand what living with vasculitis feels like.That is exactly why the Vasculitis Foundation Support Meetings exist.These virtual groups bring together patients and families who get it. Whether you are newly diagnosed or have been living with vasculitis for years, there is a space for you to talk, listen, ask questions, and feel understood.We offer weekly and monthly support groups, including options for parents, teens, young adults, and condition specific communities. Every meeting is led by facilitators, VF staff, or trained volunteers who are part of this community themselves.Learn more and find support at the link in bio

Most people don’t fully understand what living with vasculitis feels like.

That is exactly why the Vasculitis Foundation Support Meetings exist.

These virtual groups bring together patients and families who get it. Whether you are newly diagnosed or have been living with vasculitis for years, there is a space for you to talk, listen, ask questions, and feel understood.

We offer weekly and monthly support groups, including options for parents, teens, young adults, and condition specific communities. Every meeting is led by facilitators, VF staff, or trained volunteers who are part of this community themselves.

Learn more and find support at the link in bio

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Nov 10

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Did you know we are celebrating 40 years of the Vasculitis Foundation this year??? 🎉It all started in 1986 when Marilyn Sampson, a registered nurse and Wegener’s patient, founded the Wegener’s Granulomatosis Support Group, alongside Connie Barnett and Fern Thompson in Platte City.What began as a small support group built by patients, for patients, has grown into a global community dedicated to education, advocacy, research, and connection.Forty years of turning uncertainty into action.Forty years of showing up for each other.Forty years of hope.Here’s to the founders who started it all!

Did you know we are celebrating 40 years of the Vasculitis Foundation this year??? 🎉

It all started in 1986 when Marilyn Sampson, a registered nurse and Wegener’s patient, founded the Wegener’s Granulomatosis Support Group, alongside Connie Barnett and Fern Thompson in Platte City.

What began as a small support group built by patients, for patients, has grown into a global community dedicated to education, advocacy, research, and connection.

Forty years of turning uncertainty into action.
Forty years of showing up for each other.
Forty years of hope.

Here’s to the founders who started it all!

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Nov 9

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Not sure what to say to someone with a chronic illness?❌ Don’t say:“When will you be better?”“You look fine.”"You don’t seem sick."✅ Do say:“How are you doing right now?”“Can I help in any way?”Share a favorite show, song, or book. Small gestures make a big difference.Learn about their illness and talk to them about it. It means the world.Share this with friends, loved ones, and colleagues!

Not sure what to say to someone with a chronic illness?

❌ Don’t say:
“When will you be better?”
“You look fine.”
"You don’t seem sick."

✅ Do say:
“How are you doing right now?”
“Can I help in any way?”
Share a favorite show, song, or book. Small gestures make a big difference.
Learn about their illness and talk to them about it. It means the world.

Share this with friends, loved ones, and colleagues!

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Nov 6

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For 40 years, the VF has been here for the vasculitis community. 💜 From expert-led webinars and support groups to patient-powered research and our new Find a Doctor directory, we’re working to make sure no one faces vasculitis alone.Explore everything we offer at the link in bio

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Nov 5

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Newly diagnosed and wondering what comes next? 🤔 You don’t have to figure it out alone.The VF offers free educational resources, online support groups, webinars, an online doctor directory, and more to help you navigate your vasculitis journey. Learn more at the link in bio

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Nov 3

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Living with vasculitis comes with a lot of questions. We’ve got three upcoming webinars to help you find answers. 💙Newly Diagnosed with PMR: What’s Next? (Wednesday, November 4 at 11:00AM CT)Understanding Biologics: For EGPA, Severe Asthma, and COPD (Tuesday, November 17 at 11:00AM CT)Vasculitis Virtual Community Forum: Patient Perspectives (Friday, November 20 at 12:00 PM ET)Steroids and Vasculitis: Benefits, Side Effects, and Management (Thursday, December 10 at 11:00AM CT)Register for free at https://events.vasculitisfoundation.org

Living with vasculitis comes with a lot of questions. We’ve got three upcoming webinars to help you find answers. 💙

Newly Diagnosed with PMR: What’s Next? (Wednesday, November 4 at 11:00AM CT)

Understanding Biologics: For EGPA, Severe Asthma, and COPD (Tuesday, November 17 at 11:00AM CT)

Vasculitis Virtual Community Forum: Patient Perspectives (Friday, November 20 at 12:00 PM ET)

Steroids and Vasculitis: Benefits, Side Effects, and Management (Thursday, December 10 at 11:00AM CT)

Register for free at https://events.vasculitisfoundation.org

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Nov 2

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#GivingTuesday is coming December 1!One day dedicated to generosity. So many ways to make a difference.From supporting research to helping patients find connection and resources, your generosity helps move our mission forward.📅 Save the date and swipe through to learn why GivingTuesday matters to our community!

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Nov 1

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40 years ago, a vasculitis diagnosis meant facing uncertainty with few answers and limited support. Look how far we’ve come together.Thanks to supporters like YOU, we’ve:🔬 Funded 80+ research studies advancing better treatments🩺 Trained the next generation of vasculitis specialists📚 Helped develop the American College of Rheumatology/VF Treatment Guidelines💙 Built a global community connecting patients and families with trusted education and supportWe’ve accomplished so much in 40 years. But there’s still more to do.Help us shape the next 40 years. See how your gift can make a difference at the link in bio.Special thank you to our annual appeal & awareness sponsor, @amgenbiotech!

40 years ago, a vasculitis diagnosis meant facing uncertainty with few answers and limited support.

Look how far we’ve come together.

Thanks to supporters like YOU, we’ve:
🔬 Funded 80+ research studies advancing better treatments
🩺 Trained the next generation of vasculitis specialists
📚 Helped develop the American College of Rheumatology/VF Treatment Guidelines
💙 Built a global community connecting patients and families with trusted education and support

We’ve accomplished so much in 40 years. But there’s still more to do.

Help us shape the next 40 years. See how your gift can make a difference at the link in bio.

Special thank you to our annual appeal & awareness sponsor, @amgenbiotech!

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Oct 31

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We're wishing everyone a Happy Halloween!Whether you’re dressing up, handing out candy, or enjoying a cozy night in, we hope your day is filled with light-hearted fun and moments of joy.Stay safe and take good care of yourself! You deserve all the treats! 🍬🎃

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vasculitisfoundation

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Oct 30

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Your voice can help shape the future of vasculitis care. Join us for the Vasculitis Community Forum: Patient Perspectives, a national virtual listening session where patients, caregivers, and clinicians share lived experiences with those who make treatment decisions, including regulators at the FDA.📅 Friday, November 20, 2026🕛 12:00 to 2:00 PM ET💻 VirtualThe focus: the urgent need for safer, more effective alternatives to steroids, and the real-world impact of current therapies.Register at the link in our bio.

Your voice can help shape the future of vasculitis care.

Join us for the Vasculitis Community Forum: Patient Perspectives, a national virtual listening session where patients, caregivers, and clinicians share lived experiences with those who make treatment decisions, including regulators at the FDA.

📅 Friday, November 20, 2026
🕛 12:00 to 2:00 PM ET
💻 Virtual

The focus: the urgent need for safer, more effective alternatives to steroids, and the real-world impact of current therapies.

Register at the link in our bio.

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vasculitisfoundation

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Oct 29

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Vasculitis can feel isolating, especially when you’re the only person you know who has it. 💜Our support groups are a place to connect with people who truly understand, from the first-diagnosis questions to the tired days and the small wins.Register for free at the link in bio

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Oct 28

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Whether you were diagnosed yesterday or years ago, the Vasculitis Foundation is here for you. 💜Support groups. Education. Community. Resources.You don’t have to figure this out alone.Learn more at the link in our bio.

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Oct 26

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And the Dundie Award for “Not Understanding Chronic Illness” goes to… everyone who said it was just stress.It can be frustrating, isolating, and invalidating when symptoms are dismissed instead of investigated. Many people living with vasculitis go through this kind of delayed recognition before finally getting answers.If this resonates with you, you’re not alone and you deserve to be heard.Learn more at the link in bio

And the Dundie Award for “Not Understanding Chronic Illness” goes to… everyone who said it was just stress.

It can be frustrating, isolating, and invalidating when symptoms are dismissed instead of investigated. Many people living with vasculitis go through this kind of delayed recognition before finally getting answers.

If this resonates with you, you’re not alone and you deserve to be heard.
Learn more at the link in bio

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Oct 25

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Movement doesn't have to mean a full workout. 💛Parking a little farther from the door. Taking the stairs when you're able. Stretching while you watch TV. These small moments of mindful movement can add up, and for many in our vasculitis community, gentle movement can help support joint mobility, energy levels, and even mood. Of course, always listen to your body and move at your own pace. Every step counts, even the small ones.A huge thank you to Jim Walters for joining us at this year's symposium!

Movement doesn`t have to mean a full workout. 💛

Parking a little farther from the door. Taking the stairs when you`re able. Stretching while you watch TV. These small moments of mindful movement can add up, and for many in our vasculitis community, gentle movement can help support joint mobility, energy levels, and even mood.

Of course, always listen to your body and move at your own pace. Every step counts, even the small ones.

A huge thank you to Jim Walters for joining us at this year`s symposium!

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Oct 24

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For years, Tasha’s symptoms seemed unrelated. It took the right specialist to connect the pieces. 💜Read the full blog at the link in bio

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Oct 22

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Living with vasculitis often means living with medications, and with the side effects that can come along with them.Some days it’s a routine you’ve mastered. Other days it’s a new challenge you didn’t see coming. Either way, the people who understand it best are the ones walking this road too.Our online Vasculitis Voices chat community on Inspire is the perfect place to ask questions and dive deep into the conversations that matter to you with people who get it. Plus, it’s free to join!Join the conversation at the link in bio

Living with vasculitis often means living with medications, and with the side effects that can come along with them.

Some days it’s a routine you’ve mastered. Other days it’s a new challenge you didn’t see coming. Either way, the people who understand it best are the ones walking this road too.

Our online Vasculitis Voices chat community on Inspire is the perfect place to ask questions and dive deep into the conversations that matter to you with people who get it. Plus, it’s free to join!

Join the conversation at the link in bio

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vasculitisfoundation

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Oct 20

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Your kidneys don't always announce when something's wrongA few things that can point to kidney involvement: blood in your urine, foamy or bubbly urine, swelling in the legs or around the eyes, high blood pressure, fatigue, and a noticeable decrease in urine output.This isn't a diagnosis tool, just something to keep on your radar. If any of these sound familiar, bring them up with your care team.

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