National Scleroderma Foundation

Check out our CEO's message!

This week, CEO Mary J. Wheatley, IOM, CAE shared her CEO Update for February. From our 25th Anniversary, to Rare Disease Day and much more, get the latest on National Scleroderma Foundation news.

CEO Update

NORD’s Living Rare Forum

The Living Rare Forum, being held on Saturday, May 6, in Washington, D.C, is your opportunity to connect with others in the rare community!

Registration is free for patients and caregivers. There are both an in-person and virtual options to attend.

Your Digital Membership Badge!

Did you become a member of the Foundation yet? If you did, share this member badge to your social media profiles!

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If you haven’t signed up yet, you have until March 31. Sign up today and share your badge to let others know they can support the scleroderma community, too.

Become a Champion member ($35 domestic, $45 international): scleroderma.org/membership

Become a Friend member (free of charge): scleroderma.org/friend

Thank you Warrior Sponsor, Janssen!

Thank you to our Stepping Out to Cure Scleroderma Warrior sponsor, Janssen, a Johnson & Johnson Company!

Join us today by finding your walk at scleroderma.org/steppingout

Rare Disease Day is this month!

Feb. 28 is Rare Disease Day! Join us in raising awareness about scleroderma on that day – all day long. We’ll highlight our Scleroderma Warriors every hour. Help us spread the word! Use #Rare Disease Day and #scleroderma. Get your Rare Disease Day social media frames and images at rarediseaseday.org/downloads/.

Video about RDD

Volunteer for NIH Rare Disease Day!

Calling all volunteers who would like to help us staff a table at the NIH Rare Disease Day on Feb. 28! If you are interested in learning more, please email canatriello@scleroderma.org.

ICYMI: RARE Compassion Program: now accepting applications

The 2023 RARE Compassion Program is now accepting applications. Visit the RARE Compassion Program website to learn more.

Conference registration is opening soon!

You will be able register online for the 2023 National Scleroderma Conference in Orlando, Florida soon. Check out our conference website for updates!

Conference website

2023 Pre-Doctoral Summer Fellowship Awards

The National Scleroderma Foundation is now accepting applications for the 2023 Pre-Doctoral Summer Fellowship Awards. Applications are due 5 p.m., Eastern Time, Friday, April 28. Learn more about the application instructions and submission process at the link.

Pre-Doctoral Summer Fellowship Award Program

SYNC Support Group

ZOOM: 7 p.m., Eastern Time, Friday, Feb. 10

The group will feature a dating and relationship discussion along with self-care tips. Contact Amanda at alippincott@scleroderma.org or Tiare at ttolzmann@scleroderma.org.

Caregiver Support

ZOOM: 7 p.m., Eastern, monthly on the fourth Thursday

Q1 2023 dates: Jan. 25, Feb. 23, March 23

This group provides a source of emotional and social support and resources for those caring for a loved one with scleroderma. We will share self-care strategies and tools to reduce stress and enhance coping. We welcome adults, spouses, family members or friends in the caregiver role to attend.

In case you missed it, read “Creating Spaces for Our Caregivers” featuring Rachel Meyn Ugarte and her mother, Elizabeth, and learn how this virtual group came to be.

Email support group leader Debbie Haussler at caregivers@scleroderma.org to be added to the calendar invite with the Zoom link.