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Scleroderma Foundation
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eLetter #795 | January 4, 2019  

Michigan Webinar 2019 January


"The Pulmonologist's Role in a Scleroderma Patient's Life"

Webinar: January 10, 2019, 7 p.m. Eastern

Featuring Reda Girgis, M.D., of Spectrum Health - Lake Drive in Grand Rapids, Michigan.  

Join Zoom Meeting
https://zoom.us/j/4010921356

Dial by your location:

  • (646) 558-8656 U.S. (New York)
  • (720) 707-2699 U.S.

Meeting ID: 401 092 1356

Find your local number: https://zoom.us/u/adMCTnCin

SF Logo National Conference Tag


Save the Date

National Patient Education Conference
July 19-20-21

Join us in Chicago, Illinois, for the 2019 Conference. 

Visit scleroderma.org/conference to be notified when scholarship applications and registration are open.

MHealth logo University of Minnesota


Research & Treatment Centers

MHealth Rheumatology Clinic,
Clinics and Surgery Center

The Scleroderma Foundation has formal affiliations with nearly 50 scleroderma research and treatment centers in the U.S. To be designated as a center, a clinic must:

  • Demonstrate expertise in the care of patients with scleroderma.
  • Conduct scleroderma research (clinical and/or observational and/or laboratory-based).
  • Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public.

In Minnesota, there are several scleroderma research and treatment centers, including the MHealth Rheumatology Clinic, Clinics and Surgery Center.

Join Inspire!
 

"Does Anyone Have Problems With Your Throat?"

Sometimes you just need a reality check before you raise a question with your doctor.  Is this a scleroderma symptom or can it be explained by something else?  It's helpful to know if others who have scleroderma have the same experience.  That's where Insire comes in. Inspire is the online scleroderma support community.  It's open 24 hours a day, seven days a week, 52 weeks a year.  More than 40,000 people who have  scleroderma are online, talking to each other about a long list of topics.  They're probably talking about something that affects you, too.  And, unlike social media (Facebook), Inspire is a secure environment; your personal identity is protected.  

Join the conversation today

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition will be published online only.  By publishing one issue online, the Foundation reduces production costs and can use that savings toward other parts of our mission. 

Subscribers (Foundation members) will receive an email with a link to read the magazine online.

If you are a paid subscriber, please provide your current email address to ensure that you receive access to the winter Voice.

Contact webmaster@scleroderma.org,
or call (800) 722-4673.

CLINICAL TRIAL PARTICIPATION

The RESOLVE-1 Study

Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis

Corbus Pharmaceuticals LogoCorbus Pharmaceuticals is conducting a Phase 3 research study that is currently enrolling patients to determine if the investigational drug lenabasum is safe and effective for the possible treatment of diffuse cutaneous systemic sclerosis (scleroderma). This is a global, double-blind study that is expected to enroll about 350 subjects at approximately 60 sites across North America, Europe, Asia and Australia. Participants will be randomized to receive 5 mg lenabasum, 20 mg lenabasum or placebo for a 12-month study treatment period.

To participate, the following minimum criteria must be met:

  • Be at least 18 years old at the time informed consent is signed 
  • Have diffuse cutaneous SSc (skin thickening on upper arms, upper legs, or trunk) 
  • Disease duration less than or equal to six years from the first non-Raynaud's symptom
  • No new or increased doses of immunosuppressive medications within eight weeks prior to screening

Please note that there are additional criteria that must be met in order to participate in this study.

Learn more about the RESOLVE-1 study and participating centers on clinicaltrials.gov (reference identifier: NCT03398837). If you have any questions, please feel free to contact Lindsey Smith at SScpatients@corbuspharma.com.

 
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Actelion JSN 2018

 

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United Therapeutics 2018 Bronze Conference Sponsor

 

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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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