eNews: February Edition

February 28th is #RareDiseaseDay. On this day, people worldwide join together to raise awareness about rare diseases. In the U.S. alone, more than 25 million people are affected by rare diseases. Scleroderma, or systemic sclerosis, is considered a rare disease, as it affects approximately 100,000 of those people.

Help us raise awareness about scleroderma this Rare Disease Day by sharing your story and facts about the disease on social media using the hashtags #SayScleroderma, #RareDiseaseDay, and #ShowYourStripes.

Watch Now!

Behind the Mystery of Scleroderma

The Scleroderma Research Foundation was recently featured on Behind the Mystery, a recurring series devoted to rare and genetic diseases, airing on The Balancing Act on the Lifetime network.

Susan Feniger (SRF Board Member), Melissa Tarantino (Cure Crew member, dx 2014), and Dr. Lori Chung (SRF-funded researcher of Stanford University) share their respective experiences with scleroderma and why they're excited about the progress of research today.

New Survey

Share Your Experiences with Digital Ulcers

Do you live with scleroderma and have digital ulcers? You're invited to complete a survey launched by the World Scleroderma Foundation ad hoc GI Committee—led by SRF-funded investigator Dr. Zsuzsanna McMahan, Johns Hopkins Scleroderma Center, and Dr. Michael Hughes, University of Manchester.

"Based upon expert multi-disciplinary and patient input, we have designed a concise patient survey to explore the thoughts and concerns of patients with SSc regarding their experiences with digital ulcers," Dr. McMahan says.

This survey on "Digital Ulcers in Systemic Sclerosis" should take around 15 minutes of your time (or less), is completely anonymous, and your responses will remain confidential. Your input will be fundamental to understanding current management practices and learning more about what matters most to those with scleroderma as they manage digital ulcers.

If you know someone who may be interested in completing this survey, please share! And thank you SO MUCH in advance to all who participate. Scleroderma research can't progress without the help of those living with disease—together, we can make a difference.

SRF Resources

How You Can Create Your Own Free Will

The Scleroderma Research Foundation has partnered with FreeWill to give our most valued supporters an easy and straightforward way to start creating an estate plan in 25 minutes or less. This complimentary service is 100% free of charge whether you choose to include a gift to the SRF or not. You can also make changes to your will at any time.

Creating a will today ensures you can provide for the people and causes you care about most in years to come.

If you’ve already included SRF in your estate plans, let us know!

Increasing Visibility

Raynaud's Awareness Month

Raynaud’s phenomenon is a common medical condition, and most people with Raynaud’s will not develop scleroderma. But, nearly 90% of those with scleroderma DO have Raynaud’s symptoms. For this reason, Raynaud's can be a “red flag” that helps lead to earlier diagnosis and treatment of scleroderma.

This is why here, at the Scleroderma Research Foundation, we're spreading the word for Raynaud's Awareness Month. To everyone who has shared pictures, stories, and facts about Raynaud's, thank you so much! Delays in scleroderma diagnoses MUST end, and you spreading the word about Raynaud's can help end those delays. 

Ways to Give and Support Research

Donate Today / Employer Matching / Planned Giving