Alliance for Cryoglobulinemia
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Alliance for Cryoglobulinemia
Alliance for Cryoglobulinemia- an inclusive network dedicated to crowd sourcing information  for patients & medical professionals. <br>
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Rare Disease Awareness Day 2/29/16: Cryoglobulinemia and Me

Rare Disease Awareness Day 2/29/16: Cryoglobulinemia and Me | Alliance for Cryoglobulinemia | Scoop.it
This is a hard post for me to write. I don’t like to write about my health. Cyroglobulinemia has stolen a great deal of my life from me but I am determined not to allow it to become my identity. However, February 29th has been set aside as a day to remember those who suffer…
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#rarediseaseday #Cryoglobulinemia and Me

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UI Health patient fights rare disease with art, advocacy | UIC News Center

UI Health patient fights rare disease with art, advocacy | UIC News Center | Alliance for Cryoglobulinemia | Scoop.it
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Patient Advocate-Christy Levy Using her talent to raise awareness for #vasculitis #bechets #raredisease

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Bianca Bavaresco -Venezuela- Pseudotumor Cerebri - YouTube

Hello my name is Bianca Bavaresco. I am 9 years old and I would like to ask you for help. Because I would like to live without pain. I suffer from two very p...
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VF Extraordinary Vasculitis Stories: Karl and Polyarteritis Nodosa (PAN) - YouTube

In today's Extraordinary Vasculitis Story, Karl recalls the moment when his life changed. He was near the 15-mile point in the 2007 New York City Marathon wh...
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Meet Karl a #vasculitis patient who tells when his life changed. #vasculitis is more serious than you think. #raredisease 

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The Quest to Find Patients with Sanfilippo syndrome type D (MPS IIID)

The Quest to Find Patients with Sanfilippo syndrome type D (MPS IIID) | Alliance for Cryoglobulinemia | Scoop.it
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Road Map to Wellness Educational Webinars

Road Map to Wellness Educational Webinars | Alliance for Cryoglobulinemia | Scoop.it
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@vasculitisFound Road Map to Wellness "Back to School W/ #vasculitis, 8/24, https://attendee.gotowebinar.com/register/7427146438381405185

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CLICK HERE to support Cure Black Bone Disease: Time Is Running Out

Time is running out for our patients. They need your help. | Crowdfunding is a democratic way to support the fundraising needs of your community. Make a contribution today!
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#cureblackbone Time is running out. HELP! #raredisease

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Dr. Keith Roach: Chronic urticaria is the itch that won't stop - Herald & Review

Dr. Keith Roach: Chronic urticaria is the itch that won't stop - Herald & Review | Alliance for Cryoglobulinemia | Scoop.it
Dear Dr. Roach: For the past year, I have had hives on and off again, with the hives being more prominent in the morning than in the evening. I have
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How Long Does Recovery From Hep C Treatment Take

How Long Does Recovery From Hep C Treatment Take | Alliance for Cryoglobulinemia | Scoop.it
We are now in a time when more Hep C treatment options are available. If you used a combination treatment with Interferon and/or Ribavirin, your recovery may be different than someone who did not take these.
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VF Webinar: The Science of Vasculitis Research

Where are we now with the science of vasculitis? What research is currently being conducted and what questions is it addressing? What do scientists want to l...
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Achillion Shares Surge As FDA Clinical Hold On Hep C Treatment Lifted

Achillion Shares Surge As FDA Clinical Hold On Hep C Treatment Lifted | Alliance for Cryoglobulinemia | Scoop.it
Achillion Pharmaceuticals Inc. said Tuesday the U.S. Food and Drug Administration has removed the clinical hold on sovaprevir, the company's.
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Recent vasculitis drug market report with forecasts to 2021 published by leading research firm - WhaTech

Recent vasculitis drug market report with forecasts to 2021 published by leading research firm - WhaTech | Alliance for Cryoglobulinemia | Scoop.it
This vasculitis drug market report studies classifications, specifications, applications and industry structure of vasculitis drugs while providing statistics and making it a valuable source of guidance and direction for companies and individuals interested in the market.
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Medic Alert

Medic Alert | Alliance for Cryoglobulinemia | Scoop.it
Medic Alert: Bracelet, Necklace or Tag should read: No Contact with Anything Cold! : Including ice, cold compresses, cool IV fluids or cold metals. Keep patient warm and out of air conditioning.  Fluids, blood products and saline should be warmed.   Membership features include: MedicAlert Medical ID High-quality MedicAlert medical IDs are recognized by emergency responders around...
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Cold Hurts Ask Me Why-#cryogloublinemia @allianceforcryo

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"Beyond the Diagnosis" Art Exhibit Displays Patients With Rare Diseases

"Beyond the Diagnosis" Art Exhibit Displays Patients With Rare Diseases | Alliance for Cryoglobulinemia | Scoop.it
Patricia Weltin fought relentlessly to have doctors finally recognize the rare diseases that have ravaged her two daughters' lives — hypermelanosis and Ehlers-Danlos syndrome. Olivia, 19, has a def...
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What an amazing women. 

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Tess’s Tale: Social Media Catalyzes Rare Disease Diagnosis - DNA Science Blog

Tess’s Tale: Social Media Catalyzes Rare Disease Diagnosis - DNA Science Blog | Alliance for Cryoglobulinemia | Scoop.it
Attention to the plight of families with rare diseases continues to grow this week, and provides a backdrop to another compelling tale of a family seeking a diagnosis for mysterious symptoms. THE UNDIAGNOSED DISEASES NETWORK The National Human Genome Research … Continue reading »
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Living and advocating for #cryoglobulinemia #vasculitis #raredisease through #SoME  has me sitting with researchers. Finding a Cure.

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Last chance to book tickets for star-studded Glasgow event for Vasculitis

Last chance to book tickets for star-studded Glasgow event for Vasculitis | Alliance for Cryoglobulinemia | Scoop.it
Britain’s Got Talent winner [Jai McDowall|http://www.jaimcdowallofficial.com/enter.html], The X Factor Winner Shayne Ward and the Glasgow Academy Musica...
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Support Glasgow event for #vasculitis research and support. Thx Grant Currie. 

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For a Rare Disease, Drug Trials Scramble for Patients

For a Rare Disease, Drug Trials Scramble for Patients | Alliance for Cryoglobulinemia | Scoop.it
After years of effort, scientists and families of young patients with a rare genetic condition are facing the prospect of three companies launching clinical trials to develop therapies. But can the community support more than one trial at the same time?
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The Vasculitis Foundation Announces Election of Three New Members to the Board of Directors

Three new members, Dr. Jeffrey Fishbein, Dr. Peter Grayson, and Dr. Jason M. Springer have been elected to the Vasculitis Foundation Board of Directors.
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New study launched to find impact of vasculitis on employment, income

New study launched to find impact of vasculitis on employment, income | Alliance for Cryoglobulinemia | Scoop.it
The Vasculitis Patient-Powered Research Network and the Vasculitis Clinical Research Consortium launched a study entitled "Impact of vasculitis on employment and income" or "VascWork." The purpose of this study is to learn about the impact of vasculitis on employment and income in patients with different systemic vasculitides.
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Who pays the bills when you are diagnosed with a #raredisease? Check out @vpprn and their new study.

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How to Pronounce Cryoglobulinemia

This video shows you how to pronounce Cryoglobulinemia.
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It's a big word that brings big problems. Cryo Hurts. Ask me why?

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Feds will pay for hep C screenings for baby boomers - Health Care ...

Feds will pay for hep C screenings for baby boomers - Health Care ... | Alliance for Cryoglobulinemia | Scoop.it
The Centers for Medicare and Medicaid Services has decided to reimburse for hepatitis C virus screenings for two target populations, including baby boomers, Crain's sister publication Modern Healthcare reports.
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Redirecting...

#Hep C is the leading indication for #liverCancer and liver transplants and the No. 1 cause of death for patients... http://t.co/fruB4sNJwy
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Why Merck Just Spent $4 Billion On New Drugs For Hepatitis C

Why Merck Just Spent $4 Billion On New Drugs For Hepatitis C | Alliance for Cryoglobulinemia | Scoop.it
Wall Street has already declared a winner in the race to develop new treatments for hepatitis C, a virus that infects 3.2 million Americans that is the leading cause of liver transplantation in the United States.
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