Updates

October 22, 2020October 22, 2020
Machine Learning Helps Predict Stem Cell Transplant Outcomes, Study Suggests

Using a computer-based analysis to profile gene activity in blood samples may help identify the severe scleroderma patients who are most likely to respond ... Read more
October 21, 2020October 19, 2020
I’m Stronger Than Scleroderma

Who am I? On some days, I don’t know how to answer that question. But I can tell you with certainty that I am ... Read more
October 20, 2020October 20, 2020
First Patient Treated in Trial Testing FCX-013 Gene Therapy for Localized Scleroderma

A Phase 1/2 clinical trial of FCX-013, Castle Creek Biosciences‘ experimental gene therapy for moderate to severe localized scleroderma, has dosed the first ... Read more
October 19, 2020October 19, 2020
Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its ... Read more
October 15, 2020October 15, 2020
Stem Cell Transplant Improves Quality of Life in Scleroderma Patients, Study Indicates

Autologous hematopoietic stem cell transplant (AHSCT) — replacing patients’ damaged bone marrow with their own healthy blood stem cells — improves health-related quality ... Read more

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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

Machine Learning Helps Predict Stem Cell Transplant Outcomes, Study Suggests

I’m Stronger Than Scleroderma

First Patient Treated in Trial Testing FCX-013 Gene Therapy for Localized Scleroderma

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

Stem Cell Transplant Improves Quality of Life in Scleroderma Patients, Study Indicates

So You Wanna Talk About Mothers?

Talaris Raises $115M for Clinical Trials Testing FRC001 Cell Therapy for dcSSc

AURORA Trial of CIVI030 for Raynaud’s Due to Scleroderma Resumes Patient Enrollment

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

Study: Pandemic Increases Anxiety, But Not Depression, in Scleroderma Patients

Capillary.io Software Aims to Make Diagnosing Scleroderma Easier, Faster

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Study Suggests TL1A Protein as Therapeutic Target for Lung Fibrosis

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

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

iBio Selects Fusion Protein as Lead Candidate for New Scleroderma Treatment

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Machine Learning Helps Predict Stem Cell Transplant Outcomes, Study Suggests

I’m Stronger Than Scleroderma

First Patient Treated in Trial Testing FCX-013 Gene Therapy for Localized Scleroderma

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

Stem Cell Transplant Improves Quality of Life in Scleroderma Patients, Study Indicates

So You Wanna Talk About Mothers?

Talaris Raises $115M for Clinical Trials Testing FRC001 Cell Therapy for dcSSc

AURORA Trial of CIVI030 for Raynaud’s Due to Scleroderma Resumes Patient Enrollment

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

Study: Pandemic Increases Anxiety, But Not Depression, in Scleroderma Patients

Capillary.io Software Aims to Make Diagnosing Scleroderma Easier, Faster

Subscribe to our mailing list

Study Suggests TL1A Protein as Therapeutic Target for Lung Fibrosis

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

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

Pin It on Pinterest