INTERNATIONAL SCLERODERMA NETWORK

The International Scleroderma Network, home of SCLERO.ORG, voluntarily ceased operations effective April 29, 2021. We enjoyed over two decades of service to the rare disease community. Our web site grew to over 2,000 pages in 23 languages. Our forums provided stellar information & support to over 3,500 members. We are so grateful to our community & our supporters, & encourage all to continue supporting the cause through the auspices of other scleroderma charities. Thank you for having given us all the opportunity to meet & to serve you. Our site remains inventories in the Wayback Machine, for posterity, where your stories will remain with us, forever. Shelle Ensz, Founder and President

International Scleroderma Network

The International Scleroderma Network is a nonprofit organization dedicated to providing research, support, education, and awareness for scleroderma and related illnesses worldwide. It operates as a 501(c)(3) public charitable foundation, aiming to enhance understanding of this rare disease and improve patient outcomes.

Mission

The organization focuses on delivering services that cater to the diverse needs of individuals affected by scleroderma, including providing information on diagnosis, symptoms, treatments, and clinical trials. It also offers support services for patients and their families, facilitating a community where individuals can connect and share their experiences.

Activities
  • Research and Awareness: The organization supports and promotes research into scleroderma, raising awareness about the disease and its impact on those affected.
  • Support Initiatives: It provides support services such as forums and communities for those living with scleroderma, allowing them to share their experiences and find mutual support.
  • Education: Through educational resources and guidance, the International Scleroderma Network helps individuals understand the complexities of scleroderma and navigate treatment options.
Impact

The organization's efforts contribute to a global understanding of scleroderma, fostering collaboration among healthcare professionals, researchers, and affected individuals. Its initiatives help to address the diverse experiences of those living with the disease, offering a comprehensive approach to managing and understanding scleroderma.

Operations

Established in 2002, the International Scleroderma Network operates as a grassroots charity, relying on donations and volunteers to continue its mission. It serves as a valuable resource for those seeking information and support related to scleroderma and similar autoimmune diseases.

Legacy

As a leading nonprofit in the field of scleroderma, the International Scleroderma Network plays a significant role in advancing research and improving patient care globally. Its commitment to awareness and education helps to reduce the isolation often experienced by those affected by this rare disease.

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Scleroderma? We can help! History is littered with hundreds of conflicts over the future of a community group location or business that were resolved when one of the parties stepped ahead and destroyed what was there. With the original point of contention destroyed the debates would fall to the wayside. Archive Team believes that by duplicated condemned data the conversation and debate can continue as well as the richness and insight gained by keeping the materials. Our projects have ranged in size from a single volunteer downloading the data to a smallbutcritical site to over 100 volunteers stepping forward to acquire terabytes of usercreated data to save for future generations.

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💜 Thank you, International Scleroderma Network, for all the incredible work you've done for the scleroderma community! Your dedication has made a real difference in so many lives. Let’s continue to support each other and keep the conversation alive! #SclerodermaAwareness

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🌟 It's heartwarming to see how the community has come together over the years! Even though the Network has ceased operations, the impact will last forever. Let's keep sharing stories and spreading awareness about scleroderma! Every voice matters! #TogetherWeCan

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