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Scleroderma Foundation
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eLetter #890 | November 6, 2020  

Caregivers Action Network Rare Caregivers

November is National Family Caregivers Month

Rare Caregivers is a comprehensive online guide produced by the Caregiver Action Network to address the distinct needs of family caregivers of loved ones with rare diseases. 

  • Caregiving Information You Can Use Now
  • Take Care of Yourself
  • Family Matters
  • Feelings You May Have
  • Other Places to Turn for Help


Coping with the Holidays in the Age of COVID-19

Coping with the Holidays in the Age of COVID−19

WEBINAR: Thursday, November 12, from 12:30 to 1:30 p.m. Eastern

Join presenters Juliette Kleinman, A.C.S.W., L.C.S.W. and Susan Rodriguez, L.C.S.W. from the Hospital for Special Surgery (HSS), and moderators Bruce Cowan, Tri-State Chapter Executive Director, and Elizabeth Soto-Cardona, M.P.H., Scleroderma, Vasculitis & Myositis Center at HSS, for a panel discussion.  Identify personal stressors during COVID-19 and the holiday season.  Learn strategies and resources for coping with holiday stress.  Develop self-care techniques to enhance your holiday experience during COVID-19.


Scleroderma Virtual University Fall Series

Fabian Mendoza Ballesteros MD
Fabian Mendoza-Ballesteros, M.D.

Spanish Language Webinar Concludes Virtual University Fall Series, November 18

El Seminario web en español Concluye la serie de otoño de la Universidad Virtual, el 18 de Noviembre

The final webinar of the Scleroderma Virtual University patient education fall series will be presented in Spanish. Tratamientos Disponibles y lo que a un nos Falta por Descubrir, presented by Fabian Mendoza-Ballesteros, M.D., Associate Director Scleroderma Center, Thomas Jefferson University. A full description of the webinar will be posted on the Virtual University page on the Foundation's website.

El seminario web final de la serie de otoño de educación para pacientes de la Universidad Virtual sobre Esclerodermia se presentará en Español. Tratamientos Disponibles y lo que a un nos Falta por Descubrir, presentado por Fabian Mendoza-Ballesteros, M.D., Associate Director Scleroderma Center, Thomas Jefferson University. Se publicará una descripción completa del webinar en la página de la Universidad Virtual del sitio web de la Fundación.


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VIDEO: All Scleroderma Virtual University Webinars Posted on YouTube

Watch video recordings of the full fall series of Scleroderma Virtual University on the Foundation's YouTube channel.


Mitsubishi Tenabe Decode Ad 2020

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.


Stepping Out Logo Keeping Our Promise

It's Not Too Late to Donate!

You can still donate to many of the 2020 virtual Stepping Out to Cure Scleroderma fundraising events and help the Scleroderma Foundation keep the promise it made to everyone affected by scleroderma to provide the best emotional support, educational programs, and peer-reviewed research.


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MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

From the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee
Reviewed July 1

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 This "living document" was most recently reviewed on July 1. Please check it from time to time for additional updates.


News From ACR Scientific Meetings

New analysis supports long-term treatment with Ofev® in SSc-ILD patients

Thursday, November 5, Boehringer Ingelheim announced results from an interim analysis of the SENSCIS®-ON trial evaluating Ofev® (nintedanib) in patients with systemic sclerosis-associated interstitial lung disease (SSc-ILD).

The new analysis was published online as part of ACR Convergence 2020, the American College of Rheumatology (ACR) annual meeting. The interim analysis showed that the safety profile of Ofev in SENSCIS-ON was consistent with that reported over 52 weeks in the SENSCIS trial with diarrhea being the most frequently reported adverse event. The analysis showed that 347 patients in the extension study who received Ofev demonstrated a decrease in FVC over 52 weeks as did patients in the SENSCIS study. The average change in FVC from baseline to week 52 of SENSCIS-ON was −51.3 mL in all patients treated in SENSCIS-ON, while the change from baseline to week 52 in the SENSCIS trial was −42.7 mL.

More information can be found in Boehringer Ingelheim’s press release available here.

Kadmon Trial 2020
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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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