We know that every journey is different, and we offer a variety of programs and services for people liv90n ing with scleroderma, and those who care for them, no matter where they are. Click on a program below to learn more.
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.
Kids Get Scleroderma, Too Conference
KGS2 creates a safe and fun atmosphere for youth living with scleroderma to be themselves while they learn about their disease and interact with their peers. Educational activities are organized into age-appropriate groupings of younger children (5-12) and teens (13-17). Parents and guardians attending the conference will have their own session tracks designed specifically for the needs associated with raising a child with scleroderma. Siblings also benefit by learning about what their sister or brother is experiencing.
Advances in Scleroderma Research – Global Webinar
This new virtual forum provides a venue to bring together the global scleroderma research community to hear the latest breakthroughs from the field. Each session will feature recent discoveries and high impact publications related to all aspects of scleroderma science. Our purpose is to provide the most exciting and recent research advances to the global scleroderma research community in real time.
Continuing Medical Education
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.
Continuing Nurse Education
Like the CME program, the CNE program the National Scleroderma Foundation can provide continued education credits to nurses who participate in the course.
Peer-Reviewed Research Grants
The National Scleroderma Foundation is the leading nonprofit supporter of peer-reviewed, scleroderma research to discover the cause, understand the mechanism, and overcome scleroderma forever. Since its inception, the Foundation has committed over $30 million for scleroderma research, which continues as a priority of our mission.
Advocacy
Scleroderma advocates across the country use their voices to raise awareness and advance legislation to improve the lives of those living with scleroderma. These efforts happen at the local, state and national levels. Your voice makes a different.
Support Groups
Volunteer-led support groups enable individuals with scleroderma to meet and exchange information with each other. There are 155 National Scleroderma Foundation-affiliated support groups around the country. To strengthen the effectiveness of support groups, the Foundation rolled out the Scleroderma Support Group Leader Education (SPIN-SSLED) program developed in collaboration with SPIN (Scleroderma Patient-centered Intervention Network). All support group leaders are required to take this comprehensive training to ensure the highest quality of programming for individuals who have scleroderma.
Virtual Support Groups
Scleroderma support groups provide individuals opportunities for education, emotional support, and connecting with others who share the disease. However, access to such groups can be limited by geography, health issues, and the current COVID-19 pandemic. Fortunately, The National Scleroderma Foundation has several virtual groups to help individuals bypass these barriers and increase participation. Not only do virtual groups allow for safer and more accessible support, but they also provide an opportunity for more targeted discussions, allowing individuals within specific demographics to connect and share their unique experience with Scleroderma.
Virtual University
The National Scleroderma Foundation’s “Virtual University” is a library of educational videos available covering everything from managing symptoms to everyday living advice from individuals with scleroderma, physicians, and specialists posted on the Foundation’s YouTube Channel