Alliance for Cryoglobulinemia
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  • We are Alliance for Cryo

    Don’t get left out in the cold, learn everything you need to know about Cryoglobulinemia here

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The Alliance For Cryoglobulinemia Cares About You!

Welcome

Whether you are a patient, caregiver, advocate or medical professional you are in the right place if you want to learn more about Cryoglobulinemia!  We offer current information about CRYO-Vasculitis, support groups, research opportunities and most importantly we strive to foster a worldwide network to spread awareness, hope, and support about this rare type of vasculitis.

Our patient advocacy team is passionate about educating and supporting you because we understand the challenges facing patients and medical professionals including a lack of information, preventive care, and treatment.  You will find valuable resources here and learn more about our commitment to the Cryoglobulinemia community. We hope to be a valuable resource on your journey, “Living With Cryoglobulinemia”.

How It All Began

Two patients, Eileen Propp and Marianne Vennitti, living with the Rare Disease, Cryoglobulinemia Vasculitis found each other on Social Media. They quickly become friends and because of their passion, to learn more about Cryo and to share this knowledge with the world, formed The Alliance for Cryoglobulinemia in 2012.  Their Motto became, “YOU ARE RARE BUT NOT ALONE”

Who We Are

The Alliance For Cryoglobulinemia is an inclusive network of patients, caregivers, family, medical professionals and Cryoglobulinemia Ambassadors dedicated to improving the quality of life for people living with cryoglobulinemia. We offer an international support group via RareConnect and peer to peer support on Facebook. We are funded by and comprised of volunteers who generously share their talents, skills, and knowledge.

Our Vision

We strive to act as an international platform linking all efforts for Cryoglobulinemia-Vasculitis research, education, patient support and public awareness.

What We Do

  • We advocate and campaign for the need of research, timely diagnoses, effective testing, treatment, and a Cure For Cryo.
  • We partner with research organizations such as The Vasculitis Patient Powered Research Network and The Vasculitis Clinical Research Consortium.  In keeping with our research goal, the  Alliance for Cryoglobulinemia has established a Cryoglobulinemia Research Fund with our partner organization The Vasculitis Foundation.
  • We utilize Medical Advisors, and Partner organizations to unify the efforts of the Alliance For Cryoglobulinemia offering credible educational resources and information via our website, http://allianceforcryo.org/.
  • We offer peer-to-peer Support Groups to our cryoglobulinemia community of patients, family, and caregivers on Facebook and RareConnect. 
  • We create global awareness for this Rare Type of Vasculitis.

 Please, contact your doctor for all medical advice and see our disclaimer.


IT’S EASY TO CONNECT WITH US.

Don’t Be Left Out In the COLD.

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Want to Connect with Other Patients?

Ask to Join one of our Support Groups.

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Someone from our volunteer staff will contact

you in a timely manner.

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  • We cannot and do not give medical advice.  We can only share information we found helpful, direct you to resources, connect you to support groups, or share our personal experiences, which may or may not relate to your situation.
  • We will not sell or disseminate your personal or contact information to a third party.
  • At any time you may ask to be removed from our mailing list by contacting info@allianceforcryo.org – put unsubscribe in the subject line.

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    Helpful Links

    • Caregiver Resources
    • Cryoglobulinemia Brochure
    • Cryoglobulinemia Testing
    • Doctors who treat Cryoglobulinemia.
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    • Warm Gear Tips

    About Us

    Marianne Vennitti/CoFounder

    Email - mvennitti@allianceforcryo.org
    Phone - (856) 448-4085
    Twitter - @mvennitti

    Twitter -  @allianceforcryo
    Facebook - Marianne Vennitti

     

    Eileen M. Propp, Ph.D. CoFounder

    Email - epropp@allianceforcryo.org
    Phone - (925) 315-RARE
    Twitter - @proppsolutions
    Facebook - Eileen McDermott Propp

     

    Twitter Feed

    Find Cryo on Twitter

    • Cryoglobulinemia - Ask Hematologist | Understand Hematology https://t.co/33Y8Pz0q3Z134 days ago
    • Dr. Peter Merkel VPPRN https://t.co/pgyUARiBGp via @allianceforcryo154 days ago
    • Dr. Peter A. Merkel of UPenn on Vasculitis Clinical Research Consortium ... https://t.co/A5z2JSKJAJ via @YouTube154 days ago
    • Vasculitis Foundation, International Organization for Vasculitis Community, Responding to the News of Ashton Kutche… https://t.co/pvPEFOmPBU230 days ago

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