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CDCN
Castleman Disease Collaborative Network: turning promising research into permanent cures. Donate today at
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CDCN retweeted
Uplifting Athletes May 3
ICYMI we unveiled our 2019 Young Investigator Draft presented by recap earlier this week. Special thanks to & for your contribution.
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CDCN Apr 22
Join us for our 6th Annual Patient and Loved One Summit at the University of Pennsylvania on August 23-24, 2019! Learn more about the 2019 Summit and read about the 2018 Summit here: We hope to see you there!
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CDCN Apr 18
Mary Zuccato (COO), ( Co-Founder), and Dustin Shilling (Former Senior Scientific Advisor) co-authored this paper. More info plus a link to the full text is here:
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CDCN Apr 18
Replying to @CureCastleman
Any idea can be translated into a study rather than limiting research to the ideas of researchers in grant applications. Preliminary results from the CDCN and other orgs that followed its Collaborative Network Approach suggest that this model is generalizable across
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CDCN Apr 18
Replying to @CureCastleman
Patients are also empowered to fight back by supporting research through fundraising and providing their biospecimens and clinical data. This approach democratizes research, allowing the entire community to identify the most clinically relevant and pressing questions.
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CDCN Apr 18
Replying to @CureCastleman
The Collaborative Network Approach leverages and integrates the entire community of stakeholders — patients, physicians and researchers — to identify and prioritize high-impact research questions. It then recruits the most qualified researchers to conduct these studies.
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CDCN Apr 18
Replying to @CureCastleman
Due to the suboptimal research infrastructure and treatment options for disease, the CDCN spearheaded a novel strategy for advancing biomedical research, the ‘Collaborative Network Approach’.
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CDCN Apr 18
Replying to @CureCastleman
There's ∼7000 rare diseases affecting 30M in the USA, 95% of which don't have a single FDA-approved therapy. Limited progress has been made to develop new or repurpose existing therapies for rare diseases, in part because traditional funding models are not as effective for them.
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CDCN Apr 18
The CDCN published on the Collaborative Network Approach which describes the novel strategy we use to accelerate research and reach our goal of finding treatments for disease. We hope other will benefit from this research!
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CDCN Apr 16
Save the date! This year's Gala for disease will be held on Saturday, Nov 9 ! Learn more here: and check out our video from Quest 2018 here: We'll see you there!
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CDCN Apr 4
Replying to @CureCastleman
This study was funded thanks to a generous CDCN donor, and your donations to the CDCN can support similar studies to accelerate research and treatment for disease.
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CDCN Apr 4
Replying to @CureCastleman
More work is needed to validate these results before they can be used to guide care, but the preliminary findings are a great first step towards more personalized treatment for iMCD patients!
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CDCN Apr 4
Replying to @DavidFajgenbaum
A paper co-authored by Drs. , Frits van Rhee, and others from the CDCN identifies four different lab results correlated with siltuximab response, as well as a model that predicts whether a patient will respond to siltuximab.
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CDCN Apr 4
: In 2014, siltuximab became the first and only FDA-approved treatment for iMCD, which was a huge step forward in treating this rare disease. While many patients now benefit from treatment by siltuximab, it is not universally effective.
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CDCN retweeted
David Fajgenbaum, MD Mar 27
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CDCN Mar 19
Join hundreds of cyclists for the Orphan Disease Center's 6th Annual Million Dollar Bike Ride on 6/8/19 to raise $1mil+ for research! Join the Team for a 13 mile, 34 mile, or 72 mile ride! for more info!
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CDCN Mar 18
An awesome volunteer, Alex Gilroy, is holding her 4th annual CDCN March Madness Fundraiser! The winner takes home 25% of the earnings, and the remaining 75% is donated entirely to the CDCN! Her goal is $1000! Join here:
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CDCN Mar 15
We're educating people about disease across the globe! Our European Communications Lead, Martin Lukac, published on 's story and disease in , a popular newspaper in Slovakia with 1.25 million+ users!
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CDCN retweeted
@PennMedBenchmarks Mar 14
MDBR Disease Team profile #3: Bike 4 Sight>Team Castleman Disease, cycling to fund research on this rare inflammatory disorder that causes over-activation of the immune system & multiple-organ dysfunction. , Learn more:
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CDCN Mar 12
The team attended the 2019 Young Investigators Draft by to support rare diseases research! won last year’s Rare Autoimmune and Immunological Disorders award and presented the award to this year’s winner, !
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