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eLetter #792 | December 14, 2018  

YouTube 2018 Voices of Patient Advocates

 

Video: "Voices of Patient Advocates"

At the 2018 National Patient Education Conference, members of the volunteer Advocacy Committee took to the stage in the closing keynote to share their voices.  Individuals who have scleroderma and their family members are crucial elements in the Foundation's advocacy work to advance important legislation to benefit those affected by scleroderma through changes in public policy.  In front of conference attendees, our keynote speakers shared what motivated them to raise awareness about living with scleroderma in the legislative arena at both the federal and state level.

watch this video & others from the 2018 conference

ACA Open Enrollment
 

December 15 Deadline for 2019 Health Insurance Open Enrollment

If you need health insurance for 2019 via the individual marketplace of the Affordable Care Act, the open enrollment period ends December 15. Anyone who doesn't have coverage through a job, Medicare, Medicaid, the Children's Health Insurance Plan (CHIP), or other qualifying coverage is eligible to apply.

Visit HealthCare.gov to learn more and sign up

NORD logo stacked
 

NORD Webinar: "How to Make Your Insurance Work for You."

Thursday, December 20, 2 p.m. ET

Once you are signed up for your 2019 insurance plan, learn how to navigate it!

Join a webinar on how to make your insurance work for you. It will cover how insurance works, information on understanding the approval process, and tips on how to successfully reverse a denial.

This webinar is perfect for patients, caregivers, and the public

register now

USCF Scleroderma Center


Research & Treatment Centers

UCSF Scleroderma Center, University of California, San Francisco

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 the San Francisco area, go to the UCSF Scleroderma Center, University of California, San Francisco.

Patients as Partners Logo
 

Patients as Partners Survey

December 14 Deadline

If you have systemic scleroderma,
we need your input
.

The Scleroderma Foundation is working closely with a global pharmaceutical company that is currently developing a treatment for scleroderma. They are seeking the patient community’s feedback through this survey. When developing clinical trials for potential new treatments, pharmaceutical companies need and value input from patients. Your participation in this survey is critical to the development of potential new therapies for scleroderma and related conditions. Thank you for playing an active role in this process, your voice can help lead to promising future results.

Today, December 14, is the deadline to take the Systemic Scleroderma survey.

Join Inspire!
 

"Questions Pre-Diagnosis..."

Diagnosis is one of the most difficult emotional times associated with any disease, particularly with a disease like scleroderma that is more of a clinical diagnosis than a simple test. 

A doctor, of course, is the only one who can give you a diagnosis.  But others who've been down the same road can share their insights about their experience that might help you process your thoughts and feelings when confronted with uncertainty.    

That's the sort of supportive online community you can be part of at Inspire.com.  Join the conversation today.

share your story of scleroderma on Inspire

EOY 2018 Instagram Dani Steinwandt III

"Dreaming Big"

Dani Steinwandt and her mother, Karen, are learning to dream big again after a diagnosis of linear scleroderma changed Dani’s world forever.   Because of your donation, this mother and daughter team have had the resources they need to embrace the future.

Please give today to the Scleroderma Foundation. Together, we can create better tomorrows for those living with scleroderma.

Voice Fall 2018 Cover

Winter Voice Published Online Only

If you are a subscriber to Scleroderma Voice, you should note that the winter edition (November) 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

Corbus Pharmaceuticals LogoThe RESOLVE-1 Study

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

Corbus 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 6 years from the first non-Raynaud’s symptom.
  • No new or increased doses of immunosuppressive medications within 8 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


Boehringer Ingelheim 2018 Platinum National Sponsor


Bayer 2018

2018 Gilead

 

United Therapeutics 2018 Bronze Conference Sponsor

reata_horizontal_logo-2018-Bronze Natl


Arena Pharmaceuticals 2018 Corp Conf Sponsor

 

Corbus 2018 Corp Conf Sponsor

 

Genentech 2018 Corp Conf Sponsor

 

   

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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