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eLetter #796 | January 11, 2019  

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"5 Lessons Inspire Learned from its 5 Million Posts Written by Patients and Caregivers"

A December 28 article by Brian Loew, co-founder and CEO of Inspire, published in Ragan's Health Care Communication News, highlights five lessons learned from its online patient community. 

The lessons characterize the point of view and behavior of those who participate on Inspire.com across all its disease categories.  Some of the conclusions might surprise you.  

READ MORE

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Save the Date

National Patient Education Conference
July 19-20-21

Join us in Chicago, Illinois, for the 2019 National Patient Education Conference. 

Visit scleroderma.org/conference for details.

Sign up for conference e-Alerts to be notified when scholarship applications and registration are open.

Advocacy


Sign Up for Action Alerts

Public policy directly affects people who have scleroderma through laws that govern health insurance, determine accessibility standards, and establish employment practices, in addition to funding for scientific research.  The Scleroderma Foundation is actively engaged in public policy advocacy as the voice of individuals who have scleroderma and their caregivers.

You can and should be part of that process.  Stay up to date with scleroderma advocacy issues by signing up for advocacy action alerts.  Alerts are sent by email to advise you to take action by communicating with your U.S. Senator and/or Representative about their vote on legislation that will impact you.

SIGN UP TO RECEIVE ACTION ALERTS

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Research & Treatment Centers

Rutgers Health, Scleroderma Program

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.

There are two scleroderma research and treatment centers in New Jersey.  In New Brunswick, visit the Rutgers Health, Scleroderma Program, located in the Clinical Academic Building (CAB).

Join Inspire!
 

"Mastering Your Medical Paperwork"

Among the many issues that confront individuals with scleroderma, managing medical paperwork is a challenge for nearly everyone.  Wouldn't it be great to find out how others who've been doing it for a long time have figured out how to do it effectively?  Why reinvent the wheel?  If only there were someplace you could go to ask other people how they tackle the problem.  That's where Inspire comes in.  It's an online scleroderma support community that's open 24-hours a day, seven-days a week, 52-weeks a year.  And, with more than 40,000 people who have  scleroderma in the community, there's bound to be more than a few who are dealing with the same issues you are.  And, unlike social media (e.g., Facebook), Inspire is a secure environment where your personal identity is protected.  

Join the conversation today

Varga Patient Exam
 

Reach for the Cure

We pursue our mission with an urgency born from witnessing the disfigurement and disability and death caused by scleroderma. 

Please give generously to help us reach for the cure.

www.scleroderma.org/reachforthecure

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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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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