Strategic Plan Update

ZOOM: January 13, 2022; 2 PM Eastern

Join CEO Mary J. Wheatley to hear an update on the Foundation's strategic plan. Learn about progress in our exciting work to strengthen our organization and to build capacity for growth in support of individuals affected by scleroderma, to expand our education programs, and to build greater resources for research funding.

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BIPOC Scleroderma Support Group

ZOOM: January 16, 2022; 4 - 5 PM Eastern

Join our facilitators, Christy, Demi, Demetra, Erion, Eva, Marilyn, and Sy, for a discussion on economic disparities and resources that may help you navigate your scleroderma journey.

After registering, you will receive a confirmation email containing information about joining the meeting.

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Share Your Experiences of Raynaud and Digital Ulcers

Individuals who have scleroderma and experience Raynaud Phenomenon and digital ulcers are invited to participate in a study led by the Scleroderma Vascular Disease Working Group of OMERACT, an international initiative of health professionals established in 1992 to improve outcome measurement in rheumatology. 

All answers are confidential. The survey takes 20 minutes to complete. You must be 18 or older, have scleroderma, and experience Raynaud Phenomenon with or without digital ulcers. There are two rounds of the survey, January 17 and mid-February. 

SURVEY

Help Our Friends Pick a New Logo

Our friends at the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP^®) have grown and are establishing their own visual identity. Your input will help them decide on their new logo. Follow the link below to give feedback on three logo options. (RDCA-DAP is an FDA-funded partnership led by Critical Path Institute and NORD.) 

SURVEY

If You Need Health Insurance, Don't Miss the January 15 Deadline

You can still enroll in or change 2022 Marketplace health insurance right now on HealthCare.gov.

If you enroll or change a current plan by January 15, 2022, coverage will start February 1, 2022. After January 15, you can only enroll or change plans if you qualify for a Special Enrollment Period.

HEALTHCARE.GOV

Scleroderma 101: Newly Diagnosed

VIDEO: Recorded July 2021

Watch "Scleroderma 101: Newly Diagnosed," a presentation by Flavia Castelino, MD, recorded during the 2021 virtual National Scleroderma Conference. Dr. Castelino reviews the different types of scleroderma (localized versus systemic forms), with a primary focus on systemic sclerosis. Also discussed are the various clinical manifestations of systemic sclerosis, what to expect at your rheumatology visit, and an overview of the different treatment options available.

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Transition From Pediatric to Adult Cure

VIDEO: Recorded October 2021

Watch this presentation from the 2021 virtual Kids Get Scleroderma, Too! conference with Vidya Sivaraman, MD, of Nationwide Children's Hospital in Columbus, Ohio. Dr. Sivaraman discusses transition from pediatric to adult care, which involves significant movement in the parent-child relationship as the parent transfers responsibility for care to the child.

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