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Our team of dedicated nurses are here to guide families to vital research, specialists, and clinical trials. Offering guidance, solace, and support.
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About Scleroderma
Scleroderma (also called systemic sclerosis) is a chronic autoimmune disease that causes the skin and connective tissues to harden and tighten. It occurs when the immune system triggers an overproduction of collagen, affecting the skin, blood vessels, and in some cases, internal organs like the lungs, heart, and kidneys.
There are two main types: localized scleroderma, which primarily affects the skin, and systemic scleroderma, which can impact internal organs and is more serious. Symptoms range from skin thickening, Raynaud's phenomenon, joint pain, and fatigue to digestive problems and difficulty breathing. Approximately 300,000 people in the United States are living with some form of scleroderma.
That's where Know Rare comes in. We help you understand your options, connect with top scleroderma specialists, and access clinical trials — all completely free. No cost, no pressure, no strings attached.
Scleroderma Articles from Know Rare
Research in Antibody-Caused Diseases: Seronegative NMOSD May Be MOG Antibody Disease
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Frequently Asked Questions
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A clinical trial is a research study designed to evaluate the safety and efficacy of new medical treatments, interventions, or therapies. These trials aim to advance medical knowledge, improve existing treatments, or develop new ones. Participants in clinical trials play a vital role in advancing medical science, and their involvement is based on informed consent and ethical guidelines.
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Clinical trial participation provides access to cutting-edge treatments, potentially improving health outcomes, while contributing to medical advancements. Close monitoring, and personalized care from leading experts are other potential benefits.
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Clinical research is voluntary. Individuals have control over their decision to participate and are able to withdraw at any time. However, participants should recognize the responsibilities involved and consider whether they can meet the requirements before joining a study. Study centers aim to provide confidence through thorough pre-screening and screening, ensuring questions are answered, and expectations are clear.
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Our patient support team will call you to review your health history or the health history of your loved one to assess suitability for a clinical study. If there aren’t any current matches, we'll keep you informed about potential opportunities for the future.
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Think of Know Rare as your personal navigators to clinical trial information and leading disease experts. With a team experienced in medical and clinical research, we can help you understand eligibility for potential clinical trials and connect you with nearby research centers. Our understanding of the clinical trial process ensures you have a clearer idea of what to expect throughout your journey.
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There is no charge to use our services. Our mission is to create awareness about ongoing clinical trial opportunities and make them more accessible for people living with rare diseases. Our company founders, and many within our company, have walked a path of uncertainty in the face of a rare disease diagnosis, and we genuinely care about others and strive to do what we can to simplify the clinical trial process.
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One of the services Know Rare provides is to help you explore participation in clinical studies. We created this service to help make joining a study an easier, more productive experience. Know Rare has access to rare disease clinical studies listed on the FDA’s website clinicaltrials.gov. Based on your profile, which you can fill out with the help of our team, you can be directed to a clinical study that may be right for you. The team can help you make contact with the researchers at a study center of your choice. Your personal health information and contact information will not be forwarded to anyone else, including the study sites, without your specific permission.
The goal of Know Rare is to help make it easier to connect people to clinical studies. Study sponsors help in this effort by providing the funding for our efforts and by helping us get in contact with researchers and the study sites. Though the sponsors provide funding to help us connect people to their clinical studies, please know the choice of which study you wish to participate in is up to you and your doctors.
"Arm yourself with research, medical history, and facts."
Becca Salky
Diagnosed with MOGAD,
and now a medical researcher
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