September 9, 2020September 9, 2020
Lenabasum Fails to Show Efficacy in Diffuse Cutaneous SSc, Phase 3 Trial Shows
News
Treatment with lenabasum failed to outperform a placebo when given as an add-on to standard immunosuppressants in ... Read more
September 2, 2020September 2, 2020
Same But Different Photo Contest Celebrates People With Rare Diseases
News, syndicated
Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography ... Read more
August 31, 2020August 31, 2020
Phase 2 Trial of CellCept Plus Esbriet for SSc-ILD Enrolling in US
News
The Scleroderma Lung Study III (SLSIII), a Phase 2 clinical trial of oral CellCept (mycophenolate mofetil) alone or in combination ... Read more
August 26, 2020August 26, 2020
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
News, syndicated
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search ... Read more
August 24, 2020August 24, 2020
Scleroderma Patients Lacking Hallmark Autoantibodies Form Distinct Subset, Study Says
News
People with scleroderma who lack disease-related autoantibodies show a clinically distinct profile, which includes younger age at disease onset, ... Read more
August 19, 2020August 19, 2020
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
News, syndicated
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare ... Read more
August 17, 2020August 17, 2020
Infections Needing Hospital Stay Costly for Scleroderma Patients in US
News
Pneumonia and sepsis are the most common serious infections among scleroderma patients needing hospitalization in the U.S., a study reports. Its ... Read more
August 12, 2020August 12, 2020
New Streaming Channel Showcases Rare Disease Films
News, syndicated
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers ... Read more
August 10, 2020August 10, 2020
FLI1 Gene Variant Linked to Increased Scleroderma Risk, Greater Skin Thickness in Study
News
Long stretches of DNA repeats in the FLI1 gene — which gives instructions for a protein that controls the ... Read more
August 3, 2020August 3, 2020
1st Patients Dosed, Enrollment Open in Phase 2a Trial of CBD Therapy EHP-101 for dcSSc
News
The first patients have been dosed in a Phase 2a clinical trial of EHP-101, Emerald Health Pharmaceuticals‘ investigational ... Read more
July 27, 2020July 27, 2020
Cell Therapy FCR001 to Enter Phase 1/2a Trial for Diffuse Cutaneous SSc
News
Talaris Therapeutics plans to initiate a Phase 1/2a trial to test its investigational cell therapy, FCR001, in people with ... Read more
July 20, 2020July 20, 2020
Sleep Apnea Linked to High Blood Pressure in Lungs of Adults With Scleroderma
News
Obstructive sleep apnea (OSA) is associated with an increased risk of pulmonary hypertension in people with scleroderma, a study suggests. The ... Read more

September 9, 2020September 9, 2020

Lenabasum Fails to Show Efficacy in Diffuse Cutaneous SSc, Phase 3 Trial Shows

News

Treatment with lenabasum failed to outperform a placebo when given as an add-on to standard immunosuppressants in adults with diffuse cutaneous scleroderma (dcSSc), top-line data from a Phase 3 ... Read more

September 2, 2020September 2, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

News, syndicated

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme ... Read more

August 31, 2020August 31, 2020

Phase 2 Trial of CellCept Plus Esbriet for SSc-ILD Enrolling in US

News

The Scleroderma Lung Study III (SLSIII), a Phase 2 clinical trial of oral CellCept (mycophenolate mofetil) alone or in combination with Esbriet (pirfenidone) in scleroderma-associated interstitial lung disease (ILD) is enrolling patients. The trial ... Read more

August 26, 2020August 26, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

August 24, 2020August 24, 2020

Scleroderma Patients Lacking Hallmark Autoantibodies Form Distinct Subset, Study Says

News

People with scleroderma who lack disease-related autoantibodies show a clinically distinct profile, which includes younger age at disease onset, and differences in skin thickness and the proportion of patients ... Read more

August 19, 2020August 19, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

August 17, 2020August 17, 2020

Infections Needing Hospital Stay Costly for Scleroderma Patients in US

News

Pneumonia and sepsis are the most common serious infections among scleroderma patients needing hospitalization in the U.S., a study reports. Its findings also show that while the length of time these ... Read more

August 12, 2020August 12, 2020

New Streaming Channel Showcases Rare Disease Films

News, syndicated

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the ... Read more

August 10, 2020August 10, 2020

FLI1 Gene Variant Linked to Increased Scleroderma Risk, Greater Skin Thickness in Study

News

Long stretches of DNA repeats in the FLI1 gene — which gives instructions for a protein that controls the activity of genes — are linked to an increased risk ... Read more

August 3, 2020August 3, 2020

1st Patients Dosed, Enrollment Open in Phase 2a Trial of CBD Therapy EHP-101 for dcSSc

News

The first patients have been dosed in a Phase 2a clinical trial of EHP-101, Emerald Health Pharmaceuticals‘ investigational cannabidiol-derived treatment for diffuse cutaneous systemic sclerosis (dcSSc), the company announced. ... Read more

July 27, 2020July 27, 2020

Cell Therapy FCR001 to Enter Phase 1/2a Trial for Diffuse Cutaneous SSc

News

Talaris Therapeutics plans to initiate a Phase 1/2a trial to test its investigational cell therapy, FCR001, in people with diffuse cutaneous systemic sclerosis (dcSSc), the company has announced. The ... Read more

July 20, 2020July 20, 2020

Sleep Apnea Linked to High Blood Pressure in Lungs of Adults With Scleroderma

News

Obstructive sleep apnea (OSA) is associated with an increased risk of pulmonary hypertension in people with scleroderma, a study suggests. The study, “Impact of concomitant obstructive sleep apnea on pulmonary involvement ... Read more