Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

My photo
My Maddening Maze began suddenly, when I was just 47, with a plethora of autoimmune diseases. The life I knew changed forever due to chronic debilitating fatigue and pain. Faced with challenges beyond my understanding I began a never ending search for answers. I was later diagnosed in 2010 with a Rare Disease, Cryoglobulinemia Vasculitis. This disease causes my blood to gel in what appears to be temperatures lower than 70 degrees. When this phenomenon happens it can be life threatening causing organ damage, stroke, eye and vision loss along with a host of other complications. Both my kidneys and heart have been attacked by this uninvited guest and each day brings new challenges both physically and mentally. I live to find answers for myself and others that are afflicted with this rare disease and to find joy in living, whatever the cost. My passion and purpose is sharing the voice of the patient lost in the Maze and offering the face of Wellness in spite of it all.

Sunday, February 26, 2012

Rare Disease Day - February 29,2012

Handprints Across America
There are nearly 30 million Americans living with rare diseases. We want to see you and how Rare Disease Day is spreading across the United States. We invite you to print out this flyer with the Rare Disease Day logo and to take a picture of you holding it up anywhere in the US. We will post these pictures in a gallery on the Rare Disease Day US website. View what has already been submitted

Empowered patients are coming together around the world to help bring reform to our healthcare industry.  Please read.

If you or your loved one has been diagnosed with a Rare Disease then join in and fight for awareness, education and  research. Open your eyes and see the connectivity happening today on our social networks.

Join me today!

Thursday, February 16, 2012


A QUICK READInformation on the ULTRA ACT now be addressed in congress. You can easily vote.The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, will improve access to the FDA's Accelerated Approval process for very rare diseases, provide a more predictable regulatory process, bring down development costs, and spur investment in the development of treatments. Additionally, ULTRA requires the FDA to use the best science available, ensuring treatments are safe and effective and reach patients sooner. With the introduction of ULTRA, the EveryLife Foundation will begin to build Congressional support for this important legislation. Most importantly, we thank Representatives Stearns and Towns for their leadership and support of the rare disease community.

Marianne Vennitti
Cryoglobulinemia Vasculitis Organization


Want to get involved in Rare Disease Day? Just open the link and tell your story or post your photo. If nothing else just look and read about all the others with a Rare Disease who are also fighting for their lives. Alone we are Rare. Together we are Strong.
Raise awareness for patients living with Rare Diseases

Marianne Vennitti
Cryoglobulinemia Vasculitis Organization


This is the Official Video for Rare Disease Day. It's awesome.
February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European co...


MY suggestion for today for Rare Disease Day is an important one and easy to do.

Click the link below, fill in the information, and your done. By signing this form you will become an Ambassador for Rare Disease Day and you will be supporting NORD for all that they do for us to bring awareness to Rare Diseases. This will also bring exposure for Cryoglobulinemia Vasculitis because you will be asked what organization you are associated with. We have signed in as a Partner. They know us know. LET THEM HEAR YOUR VOICE!

It will only take a a couple minutes to fill in your name and organization. Please fill in Cryoglobulinemia Vasculitis Organization for yourself and all those who suffer with our disease. Thank You *Marianne*
Rare Disease Day is about realizing the similarities among all individuals impacted by rare diseases. By working together we can raise awareness and create a global impact. Whether you are an individual or part of an organization, we want you to show your support by becoming a Partner or Ambassador.


Today I would like to bring your attention to Letters to the Editor for Rare Disease Day Awareness. This is a sample letter you can print out and send to the editor of your local newspapers. Click the link and open the first link, letter to the editor.

If you have extra time browse through this page and see all that we have been supplied with to do our part for Rare Disease Day. Along we are Rare. Together we are Strong.

Cryoglobulinemia Vasculitis organization


Write Your Reps

Information is provided for you to search for your representatives on this page. THIS ONE IS REALLY IMPORTANT!

As part of Rare Disease Day, we would like to take the opportunity to reach out to Congressional Representatives to educate them about rare diseases, but we need your help! Every voice is important in this process and together we can make our voices heard. If legislators are more informed on the issues they will be able to make better decisions for the constituents they serve.
...See More
As part of Rare Disease Day, we would like to take the opportunity to reach out to Congressional Representatives to educate them about rare diseases, but we need your help! Every voice is important in this process and together we can make our voices heard. If legislators are more informed on the iss...


Monday, February 13, 2012


I'm excited to share the good news.

This morning I received a call from my oncologist telling me that my blood test for Cryoglobulinemia Vasculitis came back NEGATIVE.  This means that the LAB TEST was unable to detect any Cryoglobulins in my blood. It does not mean there aren't any. It does mean they have reduced enough to give me a negative reading. And that is great news.  I actually have had 3 incredibly awesome weeks and I feel like my body is getting stronger and healthier. I still don't know what tomorrow will bring with all the complications but for today I finally  have made progress after living with constant fear for the last 3 years and living like I was dying.

Never ever did I feel I would think about tomorrow.
Never did I think I would see normalcy of any kind.
Never did I think I would see joy in my husbands eyes.
Never did I think my body could recover.

So today I offer you a RAY OF HOPE for wherever you are on your journey

Never ever give up.


This week I will be posting ways you can participate in Rare Disease Day right from your home.

Today's post for RARE DISEASE DAY FEBRUARY 29TH, 2012 is:

                         HANDS ACROSS AMERICAN 

Simply open the link, print out the flyer, take your picture with the flyer and post it to the link provided.

Next, post that same picture to Cryoglobulinemia Vasculitis Organization Face Book page.  

You support is needed to help save lives, and to insure that treatment is found.

Saturday, February 11, 2012


I been lost again for the last year because I've been sick. New symptoms, no answers, more weakness. I'm inside my house more than not because of my Rare Disease Cryoglobulinemia Vasculitis. Cold weather causes my blood to jell causing life threatening complications. People like me need support and answers why there aren't more things being done for Rare Diseases. One out of every ten Americans has a Rare disease and 75% of us is a child. Be Aware. Please watch.