Information for Patients
Scleroderma Foundation Body Tool
The Scleroderma Foundation has unveiled a new tool to try and make it easier for patients to learn about scleroderma. The "Body Tool" is an interactive image that allows you to highlight different areas of the body and learn how scleroderma may affect them.
Scleroderma Foundation Patient Brochures
The Foundation works closely with doctors and other scleroderma experts to create brochures that feature different aspects of the disease. They are constantly being updated and added to. They are available for download.
Scleroderma Foundation Research and Treatment Centers
To be designated as a Scleroderma Center on the Foundation's website, institutions must:
- Demonstrate expertise in the care of patients with scleroderma
- Conduct scleroderma research (clinical and or observational and/or laboratory-based)
- Conduct educational activities about scleroderma, and provide information about the advances in the care and treatment of patients with scleroderma to health care professionals and the public
Scleroderma Foundation Support Groups
The Scleroderma Foundation works with its chapters to support over 150 support groups throughout the United States.
Scleroderma Foundation Chapters
The Foundation supports 20 Chapters throughout the country that help patients on a more local level.
Scleroderma Foundation Social Media
The Scleroderma Foundation is active on a number of different social media platforms. Follow them to stay up to speed on new information about scleroderma.
Scleroderma Foundation Membership
The Foundation has a membership program that delivers 4 issues of the Scleroderma Voice to your mailbox each year. Membership also allows you to get a discounted registration for the annual Patient Education Conference.
Scleroderma Foundation Advocacy
The Scleroderma Foundation advocates on the behalf of the entire scleroderma community throughout the entire year, whether there is an election or not. Several times a year, scleroderma patients and family members visit their Congressional leaders in Washington, D.C. Learn more about the Foundation's advocacy efforts.
Scleroderma Foundation Videos
The Foundation and its chapters are constantly heading informational sessions by doctors and other experts. The Foundation records some of the best sessions and has made them available to view here:
http://www.youtube.com/user/SclerodermaUS/videos
http://sclerodermavideo.com/
Scleroderma Foundation Books
The Scleroderma Foundation keeps a list of books that can be helpful to patients.
Scleroderma Foundation Online Community
The Foundation has partnered with www.inspire.com to deliver an active online community so patients and caregivers can quickly connect, regardless of where they are located. You can join the conversation here.
COVID-19 Information & Recommendations for People with Scleroderma
- UPDATED 3/20/20: URGENT, Individuals with Systemic Sclerosis Advised to Self-Isolate at Home for the Next 15 Days.
- Important Information Related to COVID-19 and Juvenile Scleroderma
Patient Fact Sheets
Mechanical Ventilation
Oxygen Therapy
Pulmonary Function Tests
Pulmonary Arterial Hypertension
Pulmonary Rehabilitation
Disclaimer:
"The ATS Lung Disease Week Web site is designed for educational purposes only. You should not rely on this information as a substitute for personal medical attention, a diagnosis from a physician, or direct medical care. If you are concerned about your health or that of a family member, please consult your family's healthcare provider immediately. Do not wait for a response from our members, staff or partners.”
