National Scleroderma Foundation

Ways to stay healthy and safe

The COVID-19 pandemic drastically changed the world in which we live. As we continue to review guidance from the Centers for Disease Control and Prevention and the American College of Rheumatology, the National Scleroderma Foundation is now prepared to return to hosting in-person meetings and events. Learn more about our recommendations and guidelines at our website.

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Important information about membership: Only 1 week left

We’re one week away from the end of this year’s Champion membership drive! Be sure to register before March 31.

Champion member ($35 per year, $45 international) can sign up at scleroderma.org/membership.

Friend members (free of charge) can sign up at scleroderma.org/friend.

We’re excited to welcome you to our 2023 membership community!

Mark your calendars for Stepping Out to Cure Scleroderma!

Be sure to mark your calendar and join us at one of the 35 Stepping Out to Cure Scleroderma walks this year. We walk to raise awareness and funding for promising scleroderma research. Whether you join us in person or virtually you are part of the cure! Sign up today!

Join a walk

Act now: Ask the U.S. Senate to support the Safe Step Act!

Step therapy, sometimes referred to as "fail first,” is a process that requires patients to take one or more alternative medications chosen by their insurance provider before they can access the medication prescribed by their health care provider. When used inappropriately, step therapy can prevent patients from accessing critical treatment. The Safe Step Act (S. 652) would protect patients who obtain insurance coverage through private insurance providers by establishing an exemption process, mandating certain exceptions to step therapy protocols, and requiring a timeframe for insurance plans to respond to exemption or appeal requests. Contact your senators today in support of this important legislation!

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ICYMI: Mental health and medical workshops

Calling all pediatric rheumatology fellows. Don't miss the "Mental Health Training for Pediatric Rheumatology Fellow and Program Director" on May 19 and May 22. The goal of this workshop is to develop comfort with mental health conversations, assessment tools and risk evaluations. The workshop will be co-facilitated by Pediatric/Adult Rheumatologist Dr. Rebecca Sadun and Child/Adolescent Psychiatrist Dr. Alison Manning. There will be multiple session times to choose from for the above dates.

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Conference Update

2023 National Scleroderma Conference Update: there will be 60+ sessions, including topics such as juvenile scleroderma, lung involvement in scleroderma, and what's new in the world of research. Learn more at our conference website.

Don't miss applying for a scholarship!

Only a couple of weeks left to apply for a 2023 National Scleroderma Conference and Kids Get Scleroderma, Too! scholarship! Download the form and email it. Full instructions are on the form. The deadline to apply is March 31. Scholarships are intended for individuals who are living with scleroderma and are in need of financial assistance to attend the conference. Priority is given to first-time conference attendees, but all are welcome to apply. We look forward to seeing you in Orlando, July 14-16!

Apply for a scholarship

Advances in Scleroderma Research Global Webinar

The global community of scleroderma research scientists will come together at the next Advances in Scleroderma Research – Global Webinar at 9 a.m., Eastern Time, Friday, March 31, to share and discuss the latest breakthroughs from the field. The webinar is open to all interested scleroderma researchers, including students and trainees!

Advances in Scleroderma Research Global Webinar

Systemic Sclerosis Upper Extremity Health Management Manual Study

There's an opportunity to be involved in a study evaluating the manual called EmPOWERment. A Systemic Sclerosis Upper Extremity Health Management Manual. The manual has four sections: 1) Build systemic sclerosis knowledge for quality rheumatology appointments; 2) Gain self-management skills; 3) Learn useful hand and skin care strategies and exercises; and 4) Improve understanding of hand surgeries for issues caused by scleroderma.

To be considered for this study:

Have an official diagnosis of scleroderma or systemic sclerosis diagnosed by a doctor
Live in the United States
Be fluent in the English language, both in written and verbal communication
Have access to a computer with internet
Be at least 18 years of age or older

You will be asked to review the manual electronically on your computer. Spend as much time as you want reviewing the manual - skim the material or read it in depth. Any level of review and feedback is appreciated and helpful! Then, you will be asked to complete a brief, online survey asking for your feedback on the manual content.

If you’re interested in participating, please email the principal investigator at jkstenger@hotmail.com.

Please note: there's a limit of 20 participants for this study.

Parents of Children with Scleroderma

ZOOM: 7:30 p.m., Eastern, Tuesday, April 5

If you care for a child living with scleroderma, do not miss the Parents of Children with Scleroderma Online Support Group! The group covers various topics to help parents navigate caring for children with scleroderma and finding support. The group meets virtually via Zoom on the first Wednesday of even months (e.g., June, August, etc.) from 7:30 - 9 p.m., and the first Wednesday of odd months (e.g., July, September, etc.) from 3 - 4:30 p.m. Email Pamela Pour for the meeting information.

Caregiver Support Group

ZOOM: 10 a.m., Eastern, Thursday, April 15

The Caregiver support group will meet virtually at 10 a.m., Eastern, Thursday, April 15. This group provides a source of emotional and social support and resources for those caring for a loved one with scleroderma. Email support group leader Debbie Haussler at caregivers@scleroderma.org to be added to the calendar invite with the zoom link.