When you or your child is first diagnosed with a rare disease it can be so difficult to know where to turn. You want to learn everything about the condition,…
Scleroderma Scleroderma refers to a whole group of diseases, all rare, that cause the skin and connective tissues in the body to harden. This is a result of excess collagen…
Background Novartis ended all of their gene therapy programs which were oncology related in 2016. Unfortunately, that meant an end to many programs that still had potential. This included cell…
According to a story from Central Charts, the biopharmaceutical company Inventiva recently announced the release of results from a Phase IIB clinical trial which tested the company's lead product candidate,…
According to a story from Scleroderma News, a recent study found that while treatment approaches for juvenile localized scleroderma were quite consistent in the UK, there were significant disparities in…
According to a story from Scleroderma News, a recent study found that men were more likely to have severe scleroderma early in their diagnosis in comparison to women. This is…
According to a story from the Dartmouth Geisel School of Medicine, a group of researchers associated with the school recently published a study that indicated that certain scleroderma patients that…
The George Washington (GW) University School of Medicine and Health Sciences has announced that they and twelve other research centers are collaborating with the Scleroderma Research Foundation to launch the…
It was a spring day in 2001. My wife Gina was asked if she wanted to go for a quick ride on our friends new motorcycle. It would change our…
The 2018 Scleroderma Foundation National Patient Education Conference The event will be an opportunity for scleroderma patients and their families to come together for a time of solidarity, community building,…
According to a story from Scleroderma News, the results from a recent study suggest that the six minute walk test can accurately predict outcomes for patients with systemic sclerosis. A…
Tomorrow is World Scleroderma Day! This date is an opportunity for anybody with an interest in scleroderma to join together as one united voice to shine a spotlight on a…
An open-label extension of a Phase II study has shown that the experimental drug lenabasum is fairly safe and tolerable in patients who have diffuse cutaneous systemic sclerosis. The full…
A recently published study has found that a protein the in blood, called CC16, can predict lung disease progression in patients with systemic sclerosis. High levels of the protein are…
Patients with a form of scleroderma called systemic sclerosis are particularly susceptible to developing high blood pressure in their heart and lungs, also known as pulmonary hypertension. A new study…
According to a story from BioSpace, the U.S. Food and Drug Administration has given Fast Track designation for nintedanib, which is undergoing testing for the treatment of systemic sclerosis with…
According to a story at medpagetoday.com, a recent study showed that stem cell transplant could be a viable new method for treating scleroderma, and could be more effective than previous…
44-year-old Callan Fabian used to be a fit and energetic man, but due to a rare disease of paralysis, his body is increasingly turning into stone. The disease is called…
Scleroderma, which is chronic hardening and tightening of the skin and connective tissues, can have a huge influence on the body, both mentally and physically. According to Andrea Peixoto, in…
In an article by Wendy Henderson on sclerodermanews.com, joint stiffness, arthritis, joint contractures, tendon pain, and nerve pain are the most common causes of pain for people living with scleroderma. The…
At 2pm Eastern Time on Tuesday, December 20th there will be a Scleroderma support group hosted by The Scleroderma Foundation's Tri-State Chapter. Anyone suffering from Scleroderma or anyone who loves somebody…
Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…
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