Scleroderma

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Information for Patients

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lung 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.

National Patient Education Conference

Each year, the Foundation brings hundreds of patients, caregivers and professionals together to spend the weekend learning about the disease, and also connecting with others that have been affected by scleroderma.  We will be hosting the 2019 Patient Education Conference on July 19-21st in Chicago.

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.

 

Patient Fact Sheets

Mechanical Ventilation
Oxygen Therapy
Pulmonary Function Tests
Pulmonary Arterial Hypertension
Pulmonary Rehabilitation

ATS Breathing in America Book

The Breathing in America: Diseases, Progress, and Hope compilation briefly describes respiratory diseases and the progress that is being made in the quest to find their cures.

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.”