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Patient Participation Required by Vasculitis Research in the UK

Patient Participation Required by Vasculitis Research in the UK | Rare Disease Aware-laughingnana CARES | Scoop.it
Vasculitis research studies are being undertaken in the UK. These require vasculitis patients to participate, particularly patients with rarer diseases
marianne vennitti's insight:

Let's work together for #vasculitis research. Are these studies, John just for UK Patients? #raredisease

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Lionel Reichardt / le Pharmageek's curator insight, August 11, 2015 2:32 AM

Let's work together for #vasculitis research. Are these studies, John just for UK Patients? #raredisease

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Four-year-old with rare illness saved by Calgary doctors

Four-year-old with rare illness saved by Calgary doctors | Rare Disease Aware-laughingnana CARES | Scoop.it
Shannon and Tyler Anderson thought they were just bringing their son in for a routine day surgery. Four-year-old Ben was his usual, energetic self that day in March, with no indication that anythin...
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4yr diagnosed with #vasculitis, #raredisease. Thx to Dr. Benseler for early diagnoses. 

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Vasculitis Foundation Invites Proposals for Research Projects

Vasculitis Foundation Invites Proposals for Research Projects | Rare Disease Aware-laughingnana CARES | Scoop.it
Grants of up to $100,000 will be awarded for research related to treatment and/or finding a cure for vasculitis....
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Cryoglobulinemia Testing

Cryoglobulinemia Testing | Rare Disease Aware-laughingnana CARES | Scoop.it
Information about testing for Cryo you may find useful.
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marianne vennitti's insight:

Rapid Screening Test for Detection way lead the way for better diagnosis.    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4321088/

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Gary S. Hoffman VF Fellowship

Gary S. Hoffman VF Fellowship | Rare Disease Aware-laughingnana CARES | Scoop.it
The Vasculitis Foundation is pleased to announce the Gary S. Hoffman Vasculitis Foundation Fellowship in honor of Dr.
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Vasculitis Foundation leads the way for #vasculitis Research.

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Comment on Confessions from a Patient with Behcet’s Disease by Mandy

Comment on Confessions from a Patient with Behcet’s Disease by Mandy | Rare Disease Aware-laughingnana CARES | Scoop.it
Jessica, my name is Mandy and I live in Tennessee. I recently started seeing a physician in Chicago Illinois for Bechets treatment, however, I’m afraid I’m going to be let down once again.
marianne vennitti's insight:

Physicians lack the knowledge patients need for #raredisease. #vasculitis #behects 

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Registration Deadline for Vasculitis Symposium – Extended to May 27

The registration deadline for the 2015 International Vasculitis Symposium has been extended to Wednesday, May 27th. The symposium will be held June 19-21, 2015 at the Omni Jacksonville.
marianne vennitti's insight:

Sign up by May 27th to JOIN folks from around the world talking about #vasculitis. Meet professionals and patients.@vasculitisfound Symposium.

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RheumaKnowledgy » Cryoglobulinemia

RheumaKnowledgy » Cryoglobulinemia | Rare Disease Aware-laughingnana CARES | Scoop.it
Cryoglobulinemia: fever, cutaneous vasculitis, arthralgia, HSM, lymphadenopathy & GN. See more at: RheumaKnowledgy http://t.co/IIfu559nm2
marianne vennitti's insight:

Rheumy news about #cryoglobulinemia.  Any news is good news for a #raredisease.  At least someone is looking at it. #raredisease #vasculitisAware2015

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Takayasu Arteritis

Takayasu Arteritis | Rare Disease Aware-laughingnana CARES | Scoop.it
#sumo #Takayasu [Medscape News]Takayasu arteritis is a rare, systemic, inflammatory large-vessel vasculitis of unknown etiology that most commonly affects women of childbearing age. It is defined as...
marianne vennitti's insight:

#Takayasu Arteritis-#raredisease No Cure. Visit vpprn.org to learn about research for this form of #vasculitis. More info at vasculitisfoundation.org

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Vasculitis-Foundation_QA

The following metadata information is extracted from video automatically by Batch Uploader: software : Lavf53.24.2.
marianne vennitti's insight:

Join the @vasculitisfound for the most current info on #vasculitis vasculitisfoundation.org

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Vasculitis Awareness Month is May - Cryoglobulinemia forums - RareConnect

Vasculitis Awareness Month is May - Cryoglobulinemia forums - RareConnect | Rare Disease Aware-laughingnana CARES | Scoop.it
Vasculitis Awareness Month is May Meet, discuss & support other patients or families living with Cryoglobulinemia. Contribute to topics, or just share what's on your mind.
marianne vennitti's insight:

Ask me why the Cold Hurts?  This month I will tell you.

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Rituxan Scores in Rare Vasculitis

Rituxan Scores in Rare Vasculitis | Rare Disease Aware-laughingnana CARES | Scoop.it
Both neuropathic and kidney manifestations cleared with anti-B-cell drug.
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Glasgow to host ‘Twilight in the Park’ event

Glasgow to host ‘Twilight in the Park’ event | Rare Disease Aware-laughingnana CARES | Scoop.it
On the evening of Saturday 13 June 2015, Scotland’s only vasculitis charity, the [Lauren Currie Twilight Foundation|http://www.thelaurencurrietwilightfo...
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Vasculitis Patient-Powered Research Network Approved for $1.4 Million in Second Phase of Development of PCORnet, a New National Clinical Research Network

Vasculitis Patient-Powered Research Network Approved for $1.4 Million in Second Phase of Development of PCORnet, a New National Clinical Research Network | Rare Disease Aware-laughingnana CARES | Scoop.it
The Vasculitis Patient-Powered Research Network (www.vpprn.org) has been approved to receive a three-year $1.4 million award by the Patient-Centered Outcomes Research Institute (PCORI) as part of the second phase of the National Patient-Centered Clinical Research Network (PCORnet).
marianne vennitti's insight:

@vpprn expanding #vasculitis research opportunities Internationally. #patientpowered. #pharma #raredisease 

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Cold Soaked: Marianne

Cold Soaked: Marianne | Rare Disease Aware-laughingnana CARES | Scoop.it
Cryo and me. Cold Soaked!   By: Marianne Vennitti This is especially for our newbies and also to share a bit about Cryo and how I flare. This is me, in my bathroom, sitting under a special lamp that immediately warms up the room.  I was fortunate to find an electrician than took an interest in me...
marianne vennitti's insight:

#Cryoglobulinemia and how it hurts.  This is just one of my many incidences living with Cryo. @allianceforcryo.

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Vasculitis Patient Powered Research Network

Vasculitis Patient Powered Research Network | Rare Disease Aware-laughingnana CARES | Scoop.it
RT @vpprn: #DidYouKnow Our patient powered network is working 2 find better treatments for #vasculitis? http://t.co/AXEPjhxJvU http://t.co/…
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Vasculitis Awareness Month 2015

Vasculitis Awareness Month 2015 | Rare Disease Aware-laughingnana CARES | Scoop.it
#VasculitisAware2015, May is Vasculitis Awareness Month learn more: http://t.co/dbG37n9SQK - http://t.co/dbguXeUj0k
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Comment on For Years Doctors Told Me I Had Fibromyalgia, Chronic Mono and “Mental Illness”, When I Really Had A Rare Disease Called CVID (Common Variable Immune Deficiency) by Lee Kicklighter

Comment on For Years Doctors Told Me I Had Fibromyalgia, Chronic Mono and “Mental Illness”, When I Really Had A Rare Disease Called CVID (Common Variable Immune Deficiency) by Lee Kicklighter | Rare Disease Aware-laughingnana CARES | Scoop.it
I have very high ebv counts. I was diagnosed with fibromyalgia. I’m not sure about diagnosis. Help.
marianne vennitti's insight:

How many of us started out with #fibromyalgia? #cryoglobulinemia 10 years before diagnoses. 

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Vasculitis (Medical Condition)

Symptoms, risk factors and treatments of Vasculitis (Medical Condition) Vasculitis is a group of disorders that destroy blood vessels by inflammation This video ...
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Vasculitis Foundation Membership Campaign – JOIN

Vasculitis Foundation Membership Campaign – JOIN | Rare Disease Aware-laughingnana CARES | Scoop.it
From May 2015 to May 2016, the Vasculitis Foundation is launching a Membership Campaign.  And we are asking for your help!
marianne vennitti's insight:

Help @vasculitisfound fund research. Join Today. vasculitisfoundation.org

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Comparison between the Traditional and a Rapid Screening Test for Cryoimmunoglobulins Detection

Comparison between the Traditional and a Rapid Screening Test for Cryoimmunoglobulins Detection | Rare Disease Aware-laughingnana CARES | Scoop.it
Objectives. A new rapid, automatic, and sensitive screening test useful to detect cryoglobulins in serum samples is proposed. Design and Methods. The increase of turbidity during the cryoglobulin aggregation was monitored spectrophotometrically in sera ...
marianne vennitti's insight:

This new testing protocol can help saves lives of patients unable to receive a positive result due to unreliable testing measures.

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Vasculitis Chile on Twitter

Vasculitis Chile on Twitter | Rare Disease Aware-laughingnana CARES | Scoop.it
@antramanais Mayo Mes Internacional de Vasculitis. Únete aquí.
https://www.facebook.com/groups/392089674164561/ … pic.twitter.com/nJgx4eHjCq
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Alliance for Cryoglobulinemia

Alliance for Cryoglobulinemia | Rare Disease Aware-laughingnana CARES | Scoop.it
Cryoglobulinemia can hit us with a triple whammy. Hyperviiscosity Syndrome. Hyperviiscosity syndrome: This is more common in type 1 cryoglobulinemia, but can sometimes happen in type II/III/combined types. | Page 2
marianne vennitti's insight:

Patients tell the truth and nothing but the truth about #cryoglobulinemia #vasculitis. www.allianceforcryo.org @mvennitti @Eileen Propp

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Eurordis Partnership with Rare Voices Australia — CheckOrphan

Eurordis Partnership with Rare Voices Australia — CheckOrphan | Rare Disease Aware-laughingnana CARES | Scoop.it
Eurordis Partnership with Rare Voices Australia
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ZBT Presents GHOSTBUSTERS in Honor of Harold Ramis

ZBT Presents GHOSTBUSTERS in Honor of Harold Ramis | Rare Disease Aware-laughingnana CARES | Scoop.it
Join our chapter in screening GHOSTBUSTERS in honor of Harold Ramis. All proceeds will be donated to the Vasculitis Foundation. Ramis was a member of our chapter during his time at Wash U. He passed away last year from complications of Vasculitis.
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