Advocates aim to foster connections this Vasculitis Awareness Month
Foundation celebrating 40th anniversary with global community
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May is Vasculitis Awareness Month, and advocates are gearing up to raise awareness, foster connection within the community, and raise funds to fuel research into ANCA-associated vasculitis (AAV) and other disorders that are marked by blood vessel inflammation.
This year’s awareness month coincides with the 40th anniversary of the Vasculitis Foundation, an advocacy group that was founded in 1986 by a nurse who was diagnosed with AAV.
“Forty years ago, a small group of determined individuals came together with a simple vision: no one should face vasculitis alone,” the foundation stated in a letter to the community. “Thanks to supporters like you, that vision has grown into a global community bringing hope and answers to thousands of families.”
Since its inception, the foundation has funded millions in research, helped to launch dozens of specialty vasculitis centers across 11 countries, and provided educational resources and support for hundreds of thousands of patients. This year, the foundation is calling on the community to raise awareness and give monetary support to keep the momentum going.
“You don’t need a personal connection to make a meaningful impact,” Emily Sybrant, the foundation’s chief development officer, said in an emailed statement to ANCA Vasculitis News. “Supporting the vasculitis community can be as simple as making a gift, sharing awareness, or learning more about the disease. Every action helps expand access to care, strengthen support systems, and move research forward.”
AAV is a specific category of vasculitis marked by self-targeting antibodies, called ANCAs, that mistakenly activate neutrophils, a type of immune cell, in the body, causing inflammation to neighboring small blood vessels.
Because AAV and other forms of vasculitis are rare, they are often misunderstood, and patients frequently face long delays to getting an accurate diagnosis.
“Raising awareness helps shorten that journey, leading to earlier diagnosis, better outcomes, and fewer lives impacted by preventable complications,” Sybrant said. “When we educate patients, providers, and communities, we’re not just sharing information—we’re helping ensure people get the care they need, when they need it most.”
May 15 marks International Vasculitis Day
Vasculitis Awareness Month, and International Vasculitis Day on May 15, also aim to foster a sense of community, reminding people affected by vasculitis that they do not have to face this disease alone.
“Connection changes everything. When patients find others who understand what they’re going through, it shifts their entire experience—from isolation to support, from fear to confidence,” Sybrant said. “That sense of community is one of the most powerful tools we have.”
Over the course of the month and beyond, the Vasculitis Foundation will be hosting a range of online events covering topics ranging from patient experiences living with vasculitis, support with travel and mobility, and medical questions about vaccines.
The foundation is also honoring five Community Heroes: doctors, researchers, patients and advocates who have gone above and beyond in their work to raise awareness and support people with vasculitis.
“Our Community Heroes initiative is especially meaningful this year as we mark the Vasculitis Foundation’s 40th anniversary,” Sybrant said, adding that the experiences of their honorees “reflect how far we’ve come and what’s possible when people come together to create change.”
Supporters pushing for more research into treatments
Advocacy organizations are also pushing to spur research into new therapies. Pam Squires, cofounder of the Eosinophilic and Rare Disease Cooperative (ERDC), noted that care for AAV has changed dramatically in recent years with new treatments approved by the U.S. Food and Drug Administration (FDA).
Good enough is not good enough. … With FDA-approved treatments now available for ANCA Vasculitis, we should not be settling for a so-so life … when we may actually be able to do better.
However, there’s still a long way to go in the fight against AAV, Squires says.
“Good enough is not good enough,” Squires said in a written statement to ANCA Vasculitis News. “With FDA-approved treatments now available for ANCA Vasculitis, we should not be settling for a so-so life … when we may actually be able to do better.”
Since 2007, the third week of May in the U.S. has been recognized as National Eosinophil Awareness Week. The week is dedicated to raising awareness about eosinophilic disorders, which are marked by excessive eosinophils, a type of immune cell. One such disorder is eosinophilic granulomatosis with polyangiitis (EGPA), the rarest type of AAV.
The American Partnership for Eosinophilic Disorders (APFED) led the work that resulted in this recognition, and will be celebrating the Awareness Week by sharing patient stories and hosting fundraising activities — including the Virtual Walk for HOPE.
“Awareness is critical because many patients face delayed diagnosis and ongoing challenges managing their disease,” Mary Jo Strobel, APFED’s executive director, said in an organization press release sent to ANCA Vasculitis News. “Through education and advocacy, we aim to improve recognition, support patients and caregivers, and advance research that will lead to better treatments and outcomes.”
The ERDC also offers hospital emergency advocacy and treatment (HEAT) kits, which provide tools to help people with EGPA communicate with healthcare providers who may not be familiar with the rare disorder. The HEAT kids are free, and are available via the organization’s website.
“New treatments are changing lives — but they can only do so much if we’re late to the table,” Squire said. “Track eosinophils the way you track everything else. Watch the trend. That single habit could change the outcome for thousands of people — and it’s exactly what our free HEAT Kits are designed to help doctors do.”
