Updates

September 22, 2020September 22, 2020
Scleroderma More Severe in People With Muscle Involvement, Study Finds

Muscular involvement is linked with more severe symptoms in people with scleroderma, affecting heart, lungs and the digestive system, a study from China reports. ... Read more
September 21, 2020September 24, 2020
Bob Saget, Susan Feniger to Host Oct. 18 Cool Comedy – Hot Cuisine, Benefiting SRF

Bob Saget will return to host the 34th annual Cool Comedy – Hot Cuisine fundraiser, benefiting the Scleroderma Research Foundation (SRF), on Sunday, Oct. 18. The ... Read more
September 17, 2020September 17, 2020
Rituximab Plus CellCept Durably Improves Lung Function in Refractory SSc-ILD, Study Suggests

Rituximab, in combination with CellCept (mycophenolate mofetil), reverses the decline in lung function in people with interstitial lung disease (ILD) associated with scleroderma ... Read more
September 15, 2020September 15, 2020
Study Describes 12 Cases of Lung Cancer in Women With Scleroderma

Detailed characteristics of 12 cases of lung cancer in people with scleroderma were described in a new study. Notably, all patients were women and ... Read more
September 9, 2020September 9, 2020
Lenabasum Fails to Show Efficacy in Diffuse Cutaneous SSc, Phase 3 Trial Shows

Treatment with lenabasum failed to outperform a placebo when given as an add-on to standard immunosuppressants in adults with diffuse cutaneous scleroderma ... Read more

Subscribe to our mailing list

Get regular updates delivered to your email box.

Thanks! Please check your email for a confirmation email.

March 16, 2018March 16, 2018

iBio Selects Fusion Protein as Lead Candidate for New Scleroderma Treatment

News

iBio has selected a lead scleroderma treatment candidate — a molecule it calls the E4-Fc fusion protein. The company plans to continue developing it, with a goal of moving it in clinical trials in people. It also hopes to ... Read more

Updates

Scleroderma More Severe in People With Muscle Involvement, Study Finds

Bob Saget, Susan Feniger to Host Oct. 18 Cool Comedy – Hot Cuisine, Benefiting SRF

Rituximab Plus CellCept Durably Improves Lung Function in Refractory SSc-ILD, Study Suggests

Study Describes 12 Cases of Lung Cancer in Women With Scleroderma

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

Same But Different Photo Contest Celebrates People With Rare Diseases

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

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

Scleroderma Patients Lacking Hallmark Autoantibodies Form Distinct Subset, Study Says

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Infections Needing Hospital Stay Costly for Scleroderma Patients in US

Subscribe to our mailing list

New Streaming Channel Showcases Rare Disease Films

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

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

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

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

ACR CRISS Score a Reliable Measure of Therapy Effectiveness in dcSSc Patients, Corbus Says

Orencia Shows Promise in Treating Localized Scleroderma in Children, Adults

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Rheumatology Expert to Lead Scleroderma Program at Cedars-Sinai’s Kao Institute

Shear-wave Elastography May Best Capture Changes in Skin Stiffness

Coalition Will Address Racial Disparities in Rare Disease Communities

TLY012 Receives FDA Orphan Drug Status for Systemic Scleroderma

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Experts Issue Guidance for Care of Scleroderma Patients During COVID-19

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

Lenabasum Use Seen to Lessen Inflammation, Fibrosis in Phase 2 dcSSc Trial

Early Use of Triple Combo Seen to Treat Diffuse Cutaneous Scleroderma

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

iBio Selects Fusion Protein as Lead Candidate for New Scleroderma Treatment

Pin It on Pinterest

Scleroderma More Severe in People With Muscle Involvement, Study Finds

Bob Saget, Susan Feniger to Host Oct. 18 Cool Comedy – Hot Cuisine, Benefiting SRF

Rituximab Plus CellCept Durably Improves Lung Function in Refractory SSc-ILD, Study Suggests

Study Describes 12 Cases of Lung Cancer in Women With Scleroderma

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

Same But Different Photo Contest Celebrates People With Rare Diseases

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

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

Scleroderma Patients Lacking Hallmark Autoantibodies Form Distinct Subset, Study Says

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Infections Needing Hospital Stay Costly for Scleroderma Patients in US

Subscribe to our mailing list

New Streaming Channel Showcases Rare Disease Films

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

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

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

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

ACR CRISS Score a Reliable Measure of Therapy Effectiveness in dcSSc Patients, Corbus Says

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Orencia Shows Promise in Treating Localized Scleroderma in Children, Adults

CellCept, Cyclophosphamide Both Improve Patient-reported Outcomes in SSc-ILD, Phase 2 Data Show

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Rheumatology Expert to Lead Scleroderma Program at Cedars-Sinai’s Kao Institute

Shear-wave Elastography May Best Capture Changes in Skin Stiffness

Coalition Will Address Racial Disparities in Rare Disease Communities

Virtual Walks, Other Activities to Spotlight Scleroderma Awareness Month

TLY012 Receives FDA Orphan Drug Status for Systemic Scleroderma

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Experts Issue Guidance for Care of Scleroderma Patients During COVID-19

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

Lenabasum Use Seen to Lessen Inflammation, Fibrosis in Phase 2 dcSSc Trial

Early Use of Triple Combo Seen to Treat Diffuse Cutaneous Scleroderma

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Pin It on Pinterest