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”
THIS BECAME THEIR MISSION
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 with cryoglobulinemia.
Our goal is to act as an international platform that links all efforts of cryoglobulinemia research, awareness, patient support, and education.
We utilize Medical Advisors and Partner organizations to provide quality information via our website and social media.
We offer an international support group on RareConnect and FaceBook.
The Alliance for Cryoglobulinemia is entirely funded by and comprised of volunteers who generously share their talents, skills, and knowledge.
The Alliance for Cryoglobulinemia campaigns for research and partners with patient-centered 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. All Donations are earmarked for Cryo-Research.
Disclaimer
The information contained on this website is intended for educational purposes only. It is not intended, nor should it be interpreted, as medical advice or directions of any kind. Any person viewing this information is strongly advised to consult their own medical doctor(s) for all matters involving their health and medical care. This website is for information purposes only.
Please Note
Our web site and free support services are for education and support only. All opinions are those of its’ members or the Alliance Team and are not to be considered medical advice. We strive for medical accuracy but please verify all information with your own Physician. This site is not for commercial use. You are welcome to contact The Alliance for Cryoglobulinemia to learn more about cryoglobulinemia. Please do not use any Alliance for Cryoglobulinemia email address or links to send solicitations or marketing messages for businesses or fundraisers.
Privacy Policy
The Alliance for Cryoglobulinemia does not ever share, sell, or give away contact information. The Alliance for Cryoglobulinemia does not require any sharing of medical information. Any information collected in any form on our website’s online forms, such as e-mail addresses and/or contact information, is accessible only within The Alliance for Cryoglobulinemia and will never be passed on to any third party unless required by law. Funding: Funding for this web site comes from individual donations. Future funds could come from organizations, membership dues, and unrestricted educational grants from organizations. This funding will not create conflicts of interest and does not influence the content of the website.