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Monday 9am - 5pm Tuesday 9am - 5pm Wednesday 9am - 5pm Thursday 9am - 5pm Friday 9am - 5pm Saturday 9am - 5pm Sunday 9am - 5pm

Alliance for Cryoglobulinemia

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Barrington, NJ
Alliance for Cryoglobulinemia

The Alliance for Cryoglobulinemia aims to connect patients, family and professionals. Welcome to the Alliance for Cryoglobulinemia Network and Support Group.

We are happy that you found us! We welcome you if you are a patient, caregiver, advocate or professional. We make every effort to offer comfort and a hand of support. Our goal is to offer information, share resources and create community support. We strive to build a global community with all who are willing to join us. Ask about our FB Support Group. Learn more at http://allianceforcryo.org/

If you are a patient we hope you will feel less alone on this journey in knowing Alliance for Cryo is here working for you. It is frightening when you first hear the word CRYOGLOBULINEMIA! We know, we heard it for a first time to! When you are sick and newly diagnosed, you do not know what comes next. Living with cryoglobulinemia is challenging. It is our hope that Alliance for Cryo community can link you to information, resources and support. Living with this rare disease is a journey you do not have to do alone. We are on this journey with you. This website is the product of collaborative effort. We offer our experiences as patients, pass on information we found helpful and strive together to find answers for our Cryoglobulinemia community. The Alliance for Cryoglobulinemia*

*Alliance for Cryoglobulinemia is peer provided information only. Please contact your doctor for all medical advice and see our disclaimer. Marianne Vennitti and Eileen Propp are the Co-Founders of the Alliance For Cryoglobulinemia. We welcome all viewers to contact us here on FaceBook or my email. Epropp@allianceforcryo.org
mvennitti@allianceforcryo.org

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.

07/25/2025

It's time to complete your 6-month check-in form for the VPPRN>

It’s easy - 10 minutes is all it takes. Here’s what you need to do: Log in to your VPPRN account - www.vpprn.org/login

*Complete all your VPPRN biannual forms.
*(Check out your scores/ratings and see how you compare with others in the Network.
*Go to the Community Dashboard tab in your VPPRN account to check out your scores and the Network scores from 2023-2025 and see how you compare.
*Complete your forms for a chance to win a gift card!
*Complete all your forms by September 15, and you will automatically be entered into a raffle for
a chance to win a $50 Amazon gift card.

07/22/2025

DID YOU KNOW: You can advance vasculitis research by simply sharing updates on your health. The VPPRN 6-month check-in forms were just launched. It’s easy – you only need 10 minutes to answer a few questions about how you are doing.
We are counting on you to update your health data.

Here's the link to log in: https://www.vpprn.org/webapp/views/studylogin/

The Cryoglobulinemia Community appreciates your participation.
Thanks!

07/02/2025

https://events.vasculitisfoundation.org/en/80L2FH6/what-you-need-to-know-about-apremilast-otezlar-sarilumab-kevzarar-and-ivig-4a3wTVn0wX/overview

What You Need to Know About Apremilast, Sarilumab, and IVIG

Monday, July 7, 3:30-4:30 PM CT

Join the Vasculitis Foundation with Dr. Alexandra Villa-Forte, Staff Physician at the Center for Vasculitis Care and Research at the Cleveland Clinic, reviews a trio of treatments for patients with vasculitis. She will give overviews on Apremilast (Otezla®), Sarilumab (Kevzara®), and IVIG treatment.

For each of the three treatments, Dr. Villa-Forte will review:

The purpose of each treatment and how it works

A brief history and background of the development of the medication or treatment

Potential side effects and interactions with other medications

Following her presentation, Dr. Villa-Forte will answer questions.

This webinar will be recorded. Register to receive an email with a link to the recording.

05/13/2025

There is still time to have your donation DOUBLED! Today, and today only, all donations will be matched dollar for dollar till we hit our $30,000 goal. This means that $5 becomes $10, $25 becomes $50 and so on! Every donation will mean twice as much; twice the support, twice the education, twice the research funded, and twice as many life-changing connections. Join us today to help ensure that no one faces vasculitis alone.
https://vasculitisfoundation.org/living-well/raise-awareness/?utm_source=facebook&utm_medium=social&utm_content=ap_kide93dscj
https://vasculitisfoundation.org/ways-to-give/make-a-donation/

05/12/2025

We asked for your Victory Over Vasculitis today. Taylor De Boer, who was diagnosed in 2023 with AAV shared this image. She made the 2025 Volleyball Nations League in Volleyball Canada.

Way to go Taylor!!

Address

Barrington, NJ
08007

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm
Saturday	9am - 5pm
Sunday	9am - 5pm

Telephone

+16095190585

Website

http://allianceforcryo.org/

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Our Story

Welcome to the Alliance for Cryoglobulinemia Network and Support Group. We are happy that you found us! We welcome you if you are a patient, caregiver, advocate or professional. We make every effort to offer comfort and a hand of support. Our goal is to offer information, share resources and create community support. We strive to build a global community with all who are willing to join us. Ask about our FB Support Group. Learn more at http://allianceforcryo.org/ If you are a patient we hope you will feel less alone on this journey in knowing Alliance for Cryo is here working for you. It is frightening when you first hear the word CRYOGLOBULINEMIA! We know, we heard it for a first time to! When you are sick and newly diagnosed, you do not know what comes next. Living with cryoglobulinemia is challenging. It is our hope that Alliance for Cryo community can link you to information, resources and support. Living with this rare disease is a journey you do not have to do alone. We are on this journey with you. This website is the product of collaborative effort. We offer our experiences as patients, pass on information we found helpful and strive together to find answers for our Cryoglobulinemia community. The Alliance for Cryoglobulinemia* *Alliance for Cryoglobulinemia is peer provided information only. Please contact your doctor for all medical advice and see our disclaimer. Marianne Vennitti and Eileen Propp are the Co-Founders of the Alliance For Cryoglobulinemia. We welcome all viewers to contact us here on FaceBook or my email. Epropp@allianceforcryo.org mvennitti@allianceforcryo.org