Alliance for Cryoglobulinemia

01/27/2026

Are you a member of the VPPRN?

Our vision is to improve the health of vasculitis patients by developing early-diagnosis methods, discovering more effective treatments, and finding cures. We invite patients with vasculitis, caregivers, and parents/guardians of patients with vasculitis to come together to learn more about symptoms, share experiences, and join a research network to improve lives.

You can help us find answers to the questions most important to you and other patients living with vasculitis.

Better Studies | Better Answers | Because of You
6-MONTH CHECK-IN FORMS (Jan 2023-July 2025)

https://vasculitisfoundation.org/treatments-research/patient-powered-research/vpprn-community-dashboard/

01/13/2026

Facts about CRYOGLOBULINEMIA
https://dermnetnz.org/topics/cryoglobulinaemia

01/13/2026

TIPS FOR MANAGING VASCULITIS IN THE WINTER

https://www.facebook.com/share/p/1Vi2k1RkXC/

Managing vasculitis in the winter can be challenging ❄️

Cold temperatures and extra fatigue can make flare-ups feel worse. Remember to pace yourself, stay warm, and give yourself permission to rest.

You’re not alone—support and tips are out there. 💙
Learn more at www.vasculitisfoundation.org

01/12/2026

Facts about Cryoglobulinemia-Vasculitis. https://dermnetnz.org/topics/cryoglobulinaemia

01/12/2026

CRYOGLOBULINEMIA, What Is It, Causes, Symptoms, and More!

Cryoglobulinemia is a rare condition characterized by the presence of abnormal proteins, known as cryoglobulins, in the blood that Learn with Osmosis

09/05/2025

Many Thanks to the Vasculitis Foundation for sharing this on Social Media.

Please share it on your social media pages to raise awareness about Cryoglobulinemia Vasculitis, a rare type of Vasculitis.

https://www.facebook.com/share/p/1BFrdGd9ex/

09/02/2025

Here is a link to a round table hosted by the Vasculitis Foundation

https://www.instagram.com/p/DOGcn0FjTvJ/?igsh=a2p5YjBqaDZxNXY5

08/24/2025

👉 "My strength did not come from lifting weights. My strength came from lifting myself up when I was knocked down.”
👉 "Feelings are something you have, not something you are."
👉 "Self-care has become a new priority – the revelation that it’s perfectly permissible to listen to your body and do what it needs."
👉 "Surrender is an incredibly difficult topic in light of chronic illness because loss is often continued and sustained.”
👉 "You can do this, and if you can’t do it today, you’ll do it tomorrow. You are not a failure.”
👉 "Don’t aim for perfection. Aim for ‘better than yesterday’.”
👉 "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”
👉 "Life is very interesting… in the end, some of your greatest pains become your greatest strengths.”

08/23/2025

Hi everyone, just a quick reminder to fill out your VPPRN 6-month forms. These updates are important because they help move us toward better treatments. If you haven’t had a chance yet, try to get to it when you can. Thanks!

08/21/2025

We invite you to join us for a one-day Conference, sponsored by the . This in-person event will feature expert-led presentations on the latest in vasculitis research and care, along with meaningful opportunities to connect with others in the community.

Whether you’re newly diagnosed or experienced in navigating vasculitis, you’ll gain valuable insights and supportive connections. Together, we learn, share, and empower one another.
https://vasculitisfoundation.org/connect/conferences/

08/19/2025

It's that time again to complete your forms for the VPPRN.
Any questions? Reach out to Marianne Vennitti.

07/27/2025

Vasculitis Community Hello,

Did you get the email about the VPPRN 6-month check-in forms? You only need 10 minutes to answer a few questions about how you are doing.

Here is the login link: https://www.vpprn.org/webapp/views/studylogin/

If you have any questions, please contact Christine Yeung, the VPPRN Network
 Email: christine.yeung@pennmedicine.upenn.edu
 Call/Text: (215) 200-6147

There’s also a chance to win a gift card if you complete them.