Hello, my name is Melissa. My journey with scleroderma began with symptom onset in 2008. I sought immediate care from a rheumatologist, but was not diagnosed until 2017 with undifferentiated…
According to a story from Scleroderma News, findings from the recent Phase 2 EDITA clinical trial suggested that ambrisentan (marketed as Letairis), which is approved to treat pulmonary arterial hypertension…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Patient Worthy partner TREND Community recently presented an abstract at the National Scleroderma Foundation Conference, which took place on July 14 in Orlando, FL. The abstract, presented as a poster…
Although the medical field has made significant strides over the years, there is still a lot we don’t know about the body. For example, what can we learn about…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
One of the symptoms of scleroderma is the formation of painful ulcers on the fingers. These ulcers are often difficult to manage; they do not respond well to treatment and…
According to a story from St. George News, when painter Linda Toombs was diagnosed with systemic scleroderma, a rare autoimmune disease, doctors told her that she wouldn't see her children…
According to a story from Scleroderma News, June is recognized as Scleroderma Awareness Month, a time for spreading awareness about scleroderma among the general public and in the medical field.…
For over thirty years, researchers at the University of Pittsburgh (UPMC) have been observing cases of limited scleroderma, a connective tissue disorder that causes thick hard patches of skin. Scleroderma…
Earlier this month, I wrote about how efzitimod, a therapy for systemic sclerosis, received Orphan Drug designation from the FDA. Now, another therapy – this one from Gesynta Pharma (“Gesynta”)…
In the United States, Orphan Drug designation is granted to drugs or biologics intended to treat, diagnose, or prevent rare diseases or conditions. For the purpose of this status, “rare”…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
While there is no cure for patients with systemic scleroderma, there are some therapies to manage symptoms, such as medications, antibiotics, physical therapy, or even surgery. But according to Medical…
Medical studies are crucial to understand the effect of diseases and treatments on patients. Over the last year and a half, the medical field has distinctly focused on COVID-19, a…
When Taylor Brown was just two years old, her mother TaMetress Reed began noticing certain symptoms, such as hardening and tightening patches of skin. As Brown grew up, the symptoms…
The month of June is recognized as Scleroderma Awareness Month, a time for spreading awareness about the rare disease scleroderma in the medical community and among the general population. This…
In an article published in The American Journal of Managed Care (AJMC), researchers provided an overview of the current treatment and management paradigm for systemic-sclerosis (also called scleroderma) with interstitial lung…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Currently, most treatments for scleroderma, a group of conditions causing the hardening of skin and connective tissue, are symptomatic. That is, they treat symptoms but not the underlying cause of…
According to a story from PR Newswire, the drug company CiVi Biopharma, Inc. today announced that its subsidiary Eicos Sciences, Inc. has resumed recruiting patients for its phase 3 clinical…
More Than Scleroderma: A Live Educational Event September 23, 2020 at 3:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
More Than Scleroderma: A Live Educational Event September 16, 2020 at 7:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
More Than Scleroderma: A Live Educational Event September 14, 2020 at 6:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
More Than Scleroderma: A Live Educational Event August 27, 2020 at 4:00 PM ET Join us for a webinar about scleroderma Because scleroderma is so rare, it can be hard…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
