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eLetter #872 | July 3, 2020  

 SF Virtual University Summer Series Logo

JoAnna Harper PharmD RPh 2020

JoAnna Harper, Pharm.D., R.Ph.

Scleroderma Foundation Virtual University
Patient Education Summer Series

WEBINAR - Telemedicine: Strategies for a Successful Visit; July 8, from 3 p.m. - 4 p.m. Eastern Time

The Scleroderma Foundation proudly announces its "Virtual University" Patient Education Summer Series of webinars running Wednesday afternoons. 

The series kicks off Wednesday, July 8, from 3 p.m. to 4 p.m. Eastern Time, with a presentation by JoAnna Harper, Pharm.D., R.Ph., CEO of Pain Partners, LLC, titled "Telemedicine: Strategies for a Successful Visit." Although it isn’t a new concept, telemedicine’s role in healthcare has become increasingly important with the rapid spread of COVID-19. Discussion includes pros and cons of a virtual visit, when not to use telemedicine, privacy and security concerns, and insurance coverage.

REGISTER

TOSS scleroderma self management

Taking Charge of Systemic Sclerosis (TOSS)

Often, persons with scleroderma do not know other people with the disease. They might live in a state where there is no chapter of the Scleroderma Foundation, or their community might not have a support group. "Taking Charge of Systemic Sclerosis” (TOSS) is a web-based self-management program designed to help you learn about scleroderma, to manage your symptoms, and to learn strategies to help you advocate for yourself.

Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. Register today to gain skills and confidence to manage systemic sclerosis (SSc) symptoms and to develop strategies to advocate for yourself. Peer mentors will empower you to take control of your life and your healthcare.

LEARN MORE

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YouTube Channel Educational Videos

The Scleroderma Foundation's YouTube Channel, www.YouTube.com/sclerodermaUS, offers a wide range of educational videos on symptom management and other topics related to living as fully as possible with a scleroderma diagnosis.  Among the offerings are a dozen or more recordings from each of the previous National Patient Education Conferences.  There are also recent videos regarding scleroderma and COVID-19, panel discussions on advocacy, and instructions and suggestions on fundraising for Stepping Out walks.  Visit the Foundation's YouTube channel to discover a world of helpful information.  

YOUTUBE

 Virtual Stepping Out eLetter

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Keeping Our Promise

The Scleroderma Foundation made a promise 22 years ago to everyone affected by scleroderma.  That promise is our mission to provide support, education, and research.  In the words of CEO Robert Riggs, "As scary as it all may be, and as difficult and as sad as this is, this is not a time to step down. This is a time to step up, to dig deep, to get creative, and engage people in new ways to keep our community strong."

Going for a walk in a crowd is not safe right now. So the Foundation got creative and pivoted to virtual fundraising events. Fundraise, take a victory lap, and post a selfie on social media with the hashtag #VirtualSteppingOut.

July & August Fundraising Events:

STEPPING OUT

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MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee

The Foundation's Medical & Scientific Advisory Board (MSAB) Leadership Committee fully endorses recent recommendation by the American College of Rheumatology (ACR) in their “COVID-19 Clinical Guidance for Patients with Rheumatic Diseases” draft summary, which states that individuals who have rheumatic diseases, including scleroderma, who test positive for COVID-19 should temporarily discontinue sulfasalazine, methotrexate, leflunomide, immunosuppressants, non-IL-6 biologics and JAK inhibitors. The ACR COVID-19 Clinical Guidance Task Force also recommends that those who have confirmed COVID-19 may continue with anti-malarial therapies—namely hydroxychloroquine and chloroquine—and, in select circumstances, IL-6 inhibitors.

Information and recommendations from the Foundation's MSAB regarding COVID-19 and scleroderma are posted at www.scleroderma.org/covid19. This "living document" was most recently updated on May 1. Please check it from time to time for additional updates.

COVID‑19

Clinical Trial Opportunity

Phase 2a Study of EHP-101

Emerald Health Pharmaceuticals logoEmerald Health Pharmaceuticals Inc. (EHP), a clinical-stage biotechnology company developing a new class of medicines to treat diseases with unmet medical needs, continues to advance its Phase 2a clinical study of EHP-101, an oral formulation of a patented new chemical entity derived from cannabidiol (CBD) being developed for the treatment of systemic sclerosis (SSc), a severe, debilitating and life-threatening form of scleroderma, and multiple sclerosis (MS).

PRESS RELEASE

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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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