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eLetter #717 | June 23, 2017 |
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National Conference: Regular Registration Ending Soon
Regular registration rates for attendees for the
19th Annual National Patient Education Conference in Chandler, Ariz., end on Monday, June 26.
Register soon to take advantage of reduced rates.
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New Tools May Aid in Earlier Scleroderma Diagnosis
Recently, the results of two studies presented at the annual European Congress of Rheumatology (EULAR) suggested that two new tools may play a pivotal role in the early diagnosis of scleroderma.
In one study, patients meeting the "very early diagnosis of systemic sclerosis" (VEDOSS) criteria were examined by a technique called nailfold videocapillaroscopy. The second study looked a a new blood test designed to detect scleroderma-specific autoantibodies.
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The Time to Stand Up for Health Care is Now!
Last
month, the United States House of Representatives passed the American Health Care Act (AHCA) which
included billions of dollars of funding cuts to your state's Medicaid program. The U.S. Senate currently is considering passing the same or similar legislation, and it is up to us to ensure that the Senate does not enact these harmful cuts.
Medicaid provides a lifeline to some of our most vulnerable citizens, individuals with rare diseases, and these cuts could be devastating. Medically necessary prescription drugs and medical care could go uncovered, and patients could be denied coverage altogether.
Learn more about how you can help from the National Organization for Rare Diseases (NORD) through their "Days of Action to Protect Your Coverage" and contact your Senator now.
Take action
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Keep Helping Make Others Scleroderma Aware
As we wrap-up Scleroderma
Awareness month, there are just a few more days to capitalize on efforts to get
the word out about scleroderma. All
month, the Scleroderma Foundation has worked alongside Scleroderma Canada and
the Scleroderma Research Foundation to raise awareness of our devastating
disease.
The “Hard Word. Harder
Disease.” campaign has been an effective knowledge building tool. Last year alone the
campaign served over 5 million impressions on
people you know, and people your friend’s friend knows. With your help,
this year’s campaign has continued to make scleroderma known.
In this last week of the
campaign, take time to share the message
one more time. If you have not already done so,
go to www.HardWord.org and take the pledge to tell
others about scleroderma. If you have
already pledged, direct your friends and
family to the site and share the stories, and make others more aware through
your personal and social media network.
Thanks for adding your
voice to scleroderma awareness.
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Free Pulmonary Hypertension Education Sessions
Living with a rare disease can be isolating, but know you aren’t alone! Join the Pulmonary Hypertension Association on the Road and connect with people who understand what it’s like living with a rare disease, speak with local PH expert.
PHA on the Road is a FREE day-long education and networking program for patients and caregivers – that includes complimentary meals, childcare and valet parking.
Register today!
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Facebook Live Q&A with Scleroderma Expert
As part of Scleroderma Awareness Month, join New York's Hospital for Special Surgery at 1:30 p.m. eastern Monday, June 26, for
a Facebook Live broadcast with a patient and Dr. Robert Spiera, the Director of
our Scleroderma, Vasculitis, & Myositis Center. Have a question
about scleroderma you'd like them to address? Comment on their Facebook page now.
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Clinical Trials
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Corbus Pharmaceuticals Phase 2 Study Data
Corbus Pharmaceuticals recently issued a statement announcing that safety and efficacy data from its previously completed Phase 2 clinical study of
anabasum (formerly known as JBT-101) for the treatment of diffuse cutaneous systemic sclerosis, which was presented at the
European League Against Rheumatism (“EULAR”) Annual Meeting in
Spain.
Dr. Robert Spiera presented the abstract titled, “A Phase 2 study safety and efficacy of anabasum (JBT-101) in systemic sclerosis.” He is the Director of the Vasculitis and
Scleroderma Program at the Hospital for Special Surgery, Weill Cornell Medical College in New York City, and Principle Investigator of Corbus' Phase 2 systemic sclerosis clinical study. View the presentation.
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Disclaimer: The Scleroderma Foundation in no way
endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is
provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.
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