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| eLetter #741 | December 15, 2017 |
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Video: Dry Eyes, Dry Mouth
(Sicca Syndrome versus
Sjogren’s Syndrome)
Philip Clements, M.D., M.P.H., recorded at the 2017 Scleroderma Foundation's National Patient Education Conference discussing dry eyes and dry mouth, which are frequently reported by patients with systemic sclerosis. There are many medications and a number of other disease entities that can occur in life that can account for some of the dryness. Less than one-quarter of the SSc patients with dryness of the eyes and/or mouth will be found to have Sjogren’s Syndrome. Evaluation and treatments for dryness will be discussed.
watch video
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Using Your Voice to Advance Research and Improve Care:
Tips for Effective Advocacy and Congressional Outreach
Watch this recording of a presentation by Philip Goglas and Dane Christiansen of Health and Medicine Counsel of Washington (HMCW), who advise the Scleroderma Foundation on important matters of public policy and legislation that affect people with scleroderma and related disorders.
watch recording
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Webinar: The 20 Percent
Scleroderma Man
January 18, 2018, 7-9 p.m. Eastern
An educational webinar for males who have scleroderma presented by rheumatologist, Dr. Vivek Nagaraja, from Michigan Medicine. Topics will include gender specific aspects of scleroderma.
to register - to join meeting
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PAH in Systemic Sclerosis
Learn More in a Special Reprint
from Scleroderma Voice
Pulmonary arterial hypertension (PAH) is a serious but rare condition that develops in approximately 8 percent to 12 percent of patients with systemic sclerosis. Learn more about risk factors, screening tests, and treatment options for PAH in a special reprint from the Fall 2017 edition of Scleroderma Voice magazine, the member magazine of the Scleroderma Foundation. The reprint includes a questionnaire for you to complete and share with your physician.
read the PAH reprint
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Prevention and Treatment
of Influenza Infection
Read this helpful guide published by the American Thoracic Society regarding "The Flu," from their patient education information series. The guide covers several topics including the flu vaccine and who should receive it.
read more
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2018 National Patient Education Conference
Sign up for e-Alerts to stay up to date on the 2018 National Patient Education Conference in Philadelphia, Pennsylvania, July 27-29.
sign up for e-alerts
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Hope Raisers
Raising Hope for a Cure
Fundraisers raise more than funds. They raise HOPE for a cure and they raise HOPE for those living with scleroderma that they will have a better quality of life. Whether you are throwing a party or running a race, or if you have a unique fundraising idea, you can become a “HOPE Raiser” and support thousands of people living with scleroderma while fueling the research for a cure.
- Choose Your Event - decide how, when, and where you want to fundraise
- Create Your Page - personalize your fundraisaing page with a message and photos
- Spread the Word - send emails from your page to invite friends and family to support you, or share the event on Facebook or Twitter.
become a hope raiser
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Our Donors Made a Connection!
Our generous donors made it possible for 55 individuals affected by scleroderma to attend our 2017 National Patient Education Conference, exceeding our goal of 50 scholarships. The conference is a unique opportunity for amazing individuals to come together, to gain strength from each other, and to learn and share valuable information about living with this disabling and life-threatening disease.
Please help us advance our mission by making a generous year-end gift today.
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| Clinical Trial Update |
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Research Participation Opportunity
Cumberland Pharmaceuticals is conducting a research study to determine whether a drug product called ifetroban will prevent cardiomyopathy in patients with diffuse scleroderma or pulmonary arterial hypertension associated with scleroderma. Eligible subjects will be reimbursed for their time and travel.
For more information, please call 615-627-4121 or email bkaelin@cumberlandpharma.com.
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Corbus Pharmaceuticals Initiates "RESOLVE-1" Phase 3 Study in Systemic Sclerosis
The company issued a press release on December 14, 2017, announcing that it has initiated a Phase 3 study ("RESOLVE-1") to test the efficacy and safety of anabasum in the treatment of diffuse cutaneous systemic sclerosis ("systemic sclerosis").
read more
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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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