The National Institutes of Health’s (NIH) National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) recently awarded five new Core Centers for Clinical Research (CCCR), one of them with a particular focus on scleroderma. The goal of the CCCRs is to develop and apply methods that…
Emerald Health Pharmaceuticals, which develops synthetic medications based on cannabinoid science, has received orphan drug status from the U.S. Food and Drug Administration (FDA) for its lead molecule, EHP-101, to treat systemic scleroderma (SSc). EHP-101, which also has the potential to treat multiple sclerosis (MS), is one of…
Scleroderma Canada and the Pulmonary Hypertension Association of Canada have collected more than 2,000 letters signed by pulmonary arterial hypertension (PAH) patients, their caregivers and loved ones urging politicians to make all PAH treatments accessible as soon as possible through public funding. Health Canada approved Actelion’s Uptravi (selexipag) in January…
Genentech has completed patient enrollment in a Phase 3 clinical trial evaluating Actemra (tocilizumab) as a treatment for scleroderma patients. It has now enrolled 211 patients worldwide for a trial that will be conducted at 106 sites. The focuSSced study (NCT02453256) will be assessing the effectiveness and…
People with scleroderma realize they need exercise to keep their joints flexible. However, those living with the condition can often experience a lot of pain and the idea of exercising and risking making the pain worse is not an appealing one. MORE: Nine ways to motivate yourself to exercise When they do find the will and energy to exercise, it’s important they pace themselves. If they push themselves too hard on a day they’re active, they may not be…
It’s well-known among people living with scleroderma that regular exercise can help keep the joints flexible. This recommendation may be well-meaning but it may not apply to all who have the condition. It’s important that everyone works with their doctors and health care team to find their ideal fitness solution. MORE: …
Scleroderma is an autoimmune disease that causes a hardening of the skin. This can cause tightness around joints, which can be very painful. The American Physiotherapy Association has some important information to help patients deal with pain management. 1. Pain comes from the brain. We often think the source of pain comes…
If you’re a patient, a family member or a friend who wants to do more to help someone suffering from a chronic illness, spreading awareness is one of the greatest gifts you can give. Awareness can mean big changes, including more money for more resources and research into more effective treatments and diagnostic tests. Awareness…
We know dealing with scleroderma sometimes feels like an uphill battle, both for the patients and the caregivers. You feel like you’re not doing enough or as if the disease is taking up all your time and attention. To help you on your journey, we’ve gathered a few quotes we…
The 19th Annual Scleroderma Foundation National Patient Education Conference is expected to bring together over 600 scleroderma patients, their families, friends, caretakers, and some of the world’s leading healthcare professionals and researchers. As previously announced, the conference will take place this week, July 21–23, in Chandler, Arizona. The venue…
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