Author Archive for: mvennitti
Entries by Marianne Vennitti
Bob talks about Blood Thickening
The medical world agrees that ‘cold’ causes Cryoglobulins to precipitate within our blood. They also agree that ‘warmth’ enables that precipitate to redissolve. They also agree that Cryo precipitation thickens ones blood and that the precipitate likes to clump together. In the world of pipes and flow, thicker fluids travel more slowly than thinner ones […]
Sheena ‘s Journey with Cryoglobulinemia & Lupus
Sometimes, just sometimes, I find writing helps. But I find it difficult writing about illness. And the thought of subsequently publishing it gives me chills, as I’ve always been a person that really dislikes publicly admitting any hardship. Over the last while, I have found some solace in talking […]
Vasculitis Patient Powered Research Network.
The Vasculitis Patient-Powered Research Network is open to ALL United States Cryoglobulinemia patients. Please Register. The Vasculitis Patient Powered Research Network (V-PPRN) is a collaborative research effort for vasculitis research involving patients as partners in research along side clinicians, researchers, physicians and interested parties. It is a joint venture of The Vasculitis Foundation and the Vasculitis Clinical Research Consortium. […]
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The Alliance for Cryoglobulinemia is here for YOU.
Do you have Cryoglobulinemia? Do you have Questions about how to live with this Rare Disease?
Would you like to meet others living with this disease? We have a support group with friends who will share their experiences and knowledge about Cryo.
Send a friend request to Marianne Vennitti or Eileen McDermott Propp and Say I want to join the support group.The Alliance for Cryoglobulinemia is here for YOU.
Do you have Cryoglobulinemia? Do you have Questions about how to live with this Rare Disease?
Would you like to meet others living with this disease? We have a support group with over 100 members.
Visit us at allianceforcryo.org Or send a friend request to Marianne Vennitti or Eileen Propp.
This is how you Pronounce our Rare Disease.
Image: Vasculitis Foundation » Cryoglobulinemia
images.google.com
Found on Google from vasculitisfoundation.org
Carrie Ostrea, Rare Disease Advocate
NYU Langone Health and Johnson & Johnson recently hosted a their Pre-Approval Access (PAA) Patient Advocacy Webinar. As part of their content sharing, they distributed this one-pager on understanding...