The National Scleroderma Foundation provides a wealth of information about the disease, about the resources you need to manage the illness to find your best path, about the research undertaken to discover the cause, understand the mechanism, and overcome scleroderma forever, and more.
- National Scleroderma Conference
- Local Programs
- Fact Sheets
- Virtual University
- Caregivers and Friends
National Scleroderma Conference
The National Scleroderma Conference brings together leading scleroderma experts from around the world to educate and connect with individuals affected by scleroderma. Typically held in a different city in the United States each year, the National Conference is one of the largest gatherings for the scleroderma community. It includes panel discussions, workshops, and other activities to help answer your questions about the disease. Sample workshops and discussion topics include:
- Advances in Basic and Clinical Research
- Caregiving: Caring for Yourself While Caring for Another
- For Males with Scleroderma Only
- Managing GI Involvement in Scleroderma
- Overlapping Conditions in Systemic Sclerosis
- Scleroderma 101
- Surgical Options for Hand Involvement
- And many others*
Conference attendees also can meet with vendors in our exhibit hall, attend a welcome networking dessert reception, and meet with high-profile scleroderma physicians, researchers, and other health care professionals in a one-on-one environment. The conference is an excellent opportunity to meet new friends and discuss ways to cope with the disease in a supportive, positive environment.
*Please note that these titles are examples only. If you attend the conference, the program book will contain the actual listing of topics and workshops.
National Scleroderma Foundation chapters hosts various educational events for individuals who have scleroderma, and their family members and caregivers throughout the year in the geographic areas they serve. These programs are listed on our website in a searchable list. you may contact your local chapter directly.
The National Scleroderma Foundation maintains a library of Fact Sheets to help you understand different aspects of the disease, diagnosis, treatment, coping with symptoms, managing everyday life, and more. A number of these fact sheets are available in Spanish and Portuguese.
The National Scleroderma Foundation’s “Virtual University” is a library of educational videos recorded live at National Scleroderma Conferences from prior years and webinars offered from time to time on specific topics of interest to the scleroderma community. These videos are available on the Foundation’s YouTube Channel but can be found via the search tool on the Virtual University page.
Physician and Continuing Education Courses
The continuing medical education initiative is a vital tool in advancing awareness and understanding of scleroderma and its comorbid conditions among medical professionals. Because scleroderma is a systemic disorder, patients are typically under the care of multiple specialists in the course of disease management, depending on the particular organ system(s) affected by the There is a great need to educate medical professionals on the various manifestation of scleroderma to foster quicker, accurate diagnosis to enhance patient outcomes/quality of life. The CME and CNE program allows the National Scleroderma Foundation to provide continued education credits to these professionals as they learn more about this complex disease.
Caregivers & Friends
If you’re the family member or friend of someone who has been diagnosed with scleroderma, you may have a lot of questions about this complex disease. While scleroderma can be a very overwhelming diagnosis for both the individual with the disease and his or her family and friends, we have created this page specifically to provide you with the necessary information to help you work with your doctor and health care team for the best possible care.
As a family member or friend, you may also fill the role of caregiver. You will find great resources for information to help you be a more effective partner and assistant on the Caregivers and Friends page of this website.