Cryoglobulinemia Vasculitis Organization

Information

Cryoglobulinemia Vasculitis Organization

CVO is an outreach of Second Chance with Saving Grace, Inc. SCwSG is 
a 501(c)(3) nonprofit organization whose mission is to help hurting people and animals. Under the ministry's Cryoglobulinemia Vasculitis Education and Awareness Department, CVO was established to unite patients and the medical community in managing and drawing attention to this rare blood disease. CVO's goal is to create a strong and courageous voice to educate, enrich and encourage patients and to champion advocacy programs regarding the care, treatment, research, diagnosis and use of service dogs for those suffering from cryoglobulinemia and associated conditions.

Members: 3
Latest Activity: Apr 3, 2012

Finding answers

Helpful Wegpage!

www.biomedcentral.com

Comparative transcriptome profiling of eye specimens, integrated with functionally enriched protein network analysis reveals candidate drug targets for treating age-related macular degeneration.

Be well,
Marianne

Discussion Forum

Research on Cryoglobulinemia and Rituxin.

Started by Marianne Vennitti Mar 22, 2012. 0 Replies

Latest researchhttp://www.medpagetoday.com/Rheumatology/GeneralRheumatology/31439If you are a Cryo patient and want to connect with others please write a post to me. We have a Cryo/Vas Org at ;https://www.facebook.com/groups/318304641519371/Or you can join our mailing list (that is not passed along). Just send an email to cryogroup@yahoo.com and put, "mailing list"  in the subject line.WE would love to have you join our group.marianne vennittiCVO Assistant Director.Fighting for awareness, support and education.Continue

Tags: rare, disease, blood, vasculitis, cryoglobulinemia

Lets talk about us.

Started by Marianne Vennitti Mar 11, 2012. 0 Replies

It is so important for all members to share a little bit about themselves for the benefit of all.  We are here to facilitate the needs of everyone in any way possible but we need to know something about you.1. What are your daily concerns?2. Have you had success with a particular type of treatment?3. How many other Cryo people do you know?4. What can this group offer you?5. What word or words carry you through your weakest moments?  Personnely for me they are Hope and Determination.6. Do you do research on your own that you can share?7. Would you be interested in become part of a world wide endeavor to find treatments for Cryo, research for Cryo, find other Cryo patients, talk on social sights to other Cryo people?Let's talk as a community united in a cause for the good of all concerned and especially those who will someday be presented with these same issue that we live with.  We can offer them a brighter tomorrow if we but our minds and efforts together.Please share with us so we can get to know you better.  Marianne/laughingnanaCVO-Assistant DirectorContinue

Comment Wall

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You need to be a member of Cryoglobulinemia Vasculitis Organization to add comments!

Comment by Diane Dike, Ph.D. on April 3, 2012 at 12:11pm

WE WILL BE THERE!!!!!! :D Looking forward to connecting! :D THANK YOU!!

Comment by ray4given on March 29, 2012 at 10:08pm

It's that time again! For those who would like to join us, we'd love to have you. We are all just gathering together to meet this Tuesday, April 3rd at 8:30 ET via toll-free phone or computer webinar to visit, ask questions and get to know one another. Also, Marianne Vennitti will be speaking to us on Wellness. It will be a great time.

To be able to join this gathering, please email me Rochelle at cryogroup@yahoo.com. I will send you an invitation that provides you the link and toll-free phone number to access it. You don't need any special equipment to join. This is open to everyone so please join us!

Rochelle Ray

Director of Cryoglobulinemia Vasculitis Organization

Comment by ray4given on March 29, 2012 at 10:07pm

Comment by ray4given on March 25, 2012 at 3:43am

Thank you for recommending Bens Friends to me, Marianne.  I look forward to meeting and supporting those with Cryoglobulinemia that join us here!  

 

Comment by Marianne Vennitti on March 2, 2012 at 11:18am
Good news! I have come across another study with Cryoglobulinemia Vasculitis. I am in the process of contacting all the involved parties to further investigation how this originated and why. It has been funded by major companies and supported by the National Institute of Health. That's great news. This gives us hope knowing how difficult it is to get to this point with any rare disease. This may have come from the vantage point of the drug company for Rituximab doing research for this drug. Big business.

I have had experience with Rituximab if you would like to know how it affected me. Perhaps there are others here that can also chime in. Opinions welcome.
www.medpagetoday.com
The B-cell depleting agent rituximab (Rituxan) effectively alleviates serious manifestations of cryoglobulinemic vasculitis, two groups of researchers found.
Marianne
 

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