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.
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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.