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?

Smiling woman with long brown hair in a light blouse, photographed indoors with a softly blurred background.

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.

Smiling woman with short curly gray hair wearing a purple top, standing outdoors in front of trees and a wooden fence.

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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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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Oct 19

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Living with vasculitis is a journey, and some days are harder than others. Your strength and energy may come and go, but every day holds victories... big or small.Share you story at the link in bio

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Oct 17

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It took nine months, three ENTs, and a trip to the ICU to name what was happening to Melody. 💜Read the full story at the link in bio

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Oct 15

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A common question from parents: is it safe for my child to get vaccinated while on medication for vasculitis? Short answer: most vaccines are still safe and recommended, even though these medications can raise infection risk.✅ Most childhood vaccines are safe for kids on immunosuppressive medications✅ Live vaccines (MMR, chickenpox) are usually held off during treatment✅ Annual flu vaccines are recommended✅ Timing may need adjusting around infusionsAlways loop in both your child's primary care doctor and rheumatologist to make the right call for your child.Get guidance and resources at the link in bio

A common question from parents: is it safe for my child to get vaccinated while on medication for vasculitis?

Short answer: most vaccines are still safe and recommended, even though these medications can raise infection risk.

✅ Most childhood vaccines are safe for kids on immunosuppressive medications
✅ Live vaccines (MMR, chickenpox) are usually held off during treatment
✅ Annual flu vaccines are recommended
✅ Timing may need adjusting around infusions

Always loop in both your child`s primary care doctor and rheumatologist to make the right call for your child.

Get guidance and resources at the link in bio

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Oct 14

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Receiving a vasculitis diagnosis can be a long and challenging journey. Because vasculitis is rare and symptoms can vary widely, recognizing the signs and reaching the right diagnosis can take time.Through our V-RED Program, we recognize the professionals who help identify vasculitis, provide a diagnosis, and connect patients with care and treatment.If a doctor, nurse, or other health care professional played an important role in your vasculitis diagnosis, we invite you to nominate them for recognition.Nominations are open through Friday, Oct 16.Link in bio

Receiving a vasculitis diagnosis can be a long and challenging journey. Because vasculitis is rare and symptoms can vary widely, recognizing the signs and reaching the right diagnosis can take time.

Through our V-RED Program, we recognize the professionals who help identify vasculitis, provide a diagnosis, and connect patients with care and treatment.

If a doctor, nurse, or other health care professional played an important role in your vasculitis diagnosis, we invite you to nominate them for recognition.

Nominations are open through Friday, Oct 16.

Link in bio

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Oct 14

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Fall 🤝 TV MarathonsWhat's your comfort show or movie?

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Oct 12

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Think vasculitis only happens later in life? Think again. This disease can impact anyone, at any age. Awareness and early recognition are key to getting the right care when it’s needed most. 💙

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Oct 11

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She was 14. Six months after losing her father, she was diagnosed with a disease she'd never even heard of.Ready Shelley’s full story at the link in bio

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Oct 10

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Today is World Mental Health Day. Living with a chronic illness like vasculitis affects more than the body, it affects mental health too.Anxiety about flares, grief over a "before" life, isolation from feeling misunderstood, all of it is real, and all of it is valid.Watch our newest webinar recording at the link in bio for ways to help navigate these feelings

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Oct 9

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Receiving a vasculitis diagnosis can be a long and challenging journey. Because vasculitis is rare and symptoms can vary widely, recognizing the signs and reaching the right diagnosis can take time.Through V-RED , we recognize the health care professionals who help identify vasculitis, provide a diagnosis, and connect patients with the vasculitis care and treatment they need.If there’s a medical professional you want to honor for giving you an early diagnosis of vasculitis, submit your nomination today at the link in bio

Receiving a vasculitis diagnosis can be a long and challenging journey. Because vasculitis is rare and symptoms can vary widely, recognizing the signs and reaching the right diagnosis can take time.

Through V-RED , we recognize the health care professionals who help identify vasculitis, provide a diagnosis, and connect patients with the vasculitis care and treatment they need.

If there’s a medical professional you want to honor for giving you an early diagnosis of vasculitis, submit your nomination today at the link in bio

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Oct 8

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Being diagnosed with a rare disease as a teen comes with challenges most of their friends will never understand.If you know a teen navigating a vasculitis diagnosis, consider sharing this with them. They deserve to know they're not alone.

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Oct 7

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rock beats scissors…

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Oct 5

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Just diagnosed with vasculitis? It’s normal to feel overwhelmed, scared, or even relieved to finally have answers. The VF is here to guide you every step of the way with resources on:💙 Your specific type of vasculitis💙 Building a personalized treatment plan💙 Understanding medications and side effects💙 Finding support from others who understand💙 Caring for your mind and body with tips for movement, mental health, and self-advocacy... and more!Explore resources at the link in bio

Just diagnosed with vasculitis? It’s normal to feel overwhelmed, scared, or even relieved to finally have answers.

The VF is here to guide you every step of the way with resources on:

💙 Your specific type of vasculitis
💙 Building a personalized treatment plan
💙 Understanding medications and side effects
💙 Finding support from others who understand
💙 Caring for your mind and body with tips for movement, mental health, and self-advocacy
... and more!

Explore resources at the link in bio

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Oct 4

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Whether it's your first infusion or your fiftieth, these small things can make the day a lot easier!Got a tip that's not on here? Drop it in the comments

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Oct 3

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Our FREE Empowerment Kit is designed to support families of children and teens recently diagnosed with vasculitis.Each free kit includes:💙 A guide for parents💙 A guide for teachers💙 Vasculitis Foundation Resource GuideHealthcare providers can order kits for their offices to help families navigate a new diagnosis. Compact, free, and full of essential resources.Order your free kit at the link in bio

Our FREE Empowerment Kit is designed to support families of children and teens recently diagnosed with vasculitis.

Each free kit includes:
💙 A guide for parents
💙 A guide for teachers
💙 Vasculitis Foundation Resource Guide

Healthcare providers can order kits for their offices to help families navigate a new diagnosis. Compact, free, and full of essential resources.

Order your free kit at the link in bio

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Oct 3

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An early vasculitis diagnosis can make all the differenceIf there’s a medical professional you want to honor for giving you an early diagnosis of vasculitis, submit your nomination today at the link in bio

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