Updates

April 8, 2021April 8, 2021
New Computer Learning Tool 95% Accurate in Screening for SSc

Using a laptop, a computer-based machine learning tool was able to distinguish, with 95% accuracy, normal skin images from those collected from people with systemic sclerosis ... Read more
April 7, 2021April 5, 2021
During Flare-ups, My Scleroderma Body Pauses Life

Messy is the best word I can use to describe a flare-up caused by scleroderma. My home, my thoughts, my life — they all unravel, ... Read more
April 6, 2021April 6, 2021
Actemra, Given Early to SSc-ILD Patients, Preserves Lung Health, Trial Data Show

CT scans show that Actemra (tocilizumab) can prevent lung disease in patients with systemic scleroderma if detected early enough, an analysis of Phase 3 ... Read more
April 1, 2021April 1, 2021
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how ... Read more
March 30, 2021March 30, 2021
Applications Sought for Foundation Scholarships

The Anna Belle Carter Memorial Foundation (ABCMF) is offering scholarships to students living with scleroderma and their siblings who remain under the care of ... 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 treat ... Read more

Updates

New Computer Learning Tool 95% Accurate in Screening for SSc

During Flare-ups, My Scleroderma Body Pauses Life

Actemra, Given Early to SSc-ILD Patients, Preserves Lung Health, Trial Data Show

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Applications Sought for Foundation Scholarships

CAN10 Shows Promise in Early Studies, Supporting Planned Clinical Trial

C21 Improved Blood Flow in People With Raynaud’s Secondary to Scleroderma

Sleeping on an Inclined Bed Leads to an Enormous Wedgie

Scleroderma May Impair Ability to Eliminate Excess Cholesterol

Lung Involvement Increases Patients’ In-hospital Risk of Death, Costs

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FDA Approves Actemra to Treat Adults With SSc-ILD

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Stem Cell Transplant Seen to Aid Skin and Lung Health in Severe SSc

ANCA‐associated Vasculitis Found to Cause Nerve Damage in SSc Patient

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Lower Back Pain Likely Drives Chronic Pain in Early Stages of Scleroderma

This Rare Disease Day, I’m Asking Others to Help Us Be Less Rare

Corticosteroids Plus Rituximab Not Likely to Injure Kidneys of SSc Patients

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Poor Core Stability Evident in SSc Patients, Affecting Life Quality

Fatigue, Raynaud’s Among Top Barriers to Exercise, Survey Finds

FDA Grants Priority Review to Esbriet for Unclassifiable Interstitial Lung Disease

Ziritaxestat Clinical Trials Discontinued

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Autoantibodies Against Telomeres May Help Identify SSc With Lung Disease

Work-related Crystalline Silica Exposure Linked to Higher Scleroderma Risk

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

How to Endure the Torture of Esophageal Testing

Tiny RNA Molecule Found to Regulate Collagen, Fibrosis in SSc-ILD

Differences in Activity of Various Genes May Drive Scleroderma

B-Cell Depletion Therapy May Be Effective

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

NORD’s Caregiver Respite Program Continues Through Pandemic

iBio Selects Fusion Protein as Lead Candidate for New Scleroderma Treatment

New Computer Learning Tool 95% Accurate in Screening for SSc

During Flare-ups, My Scleroderma Body Pauses Life

Actemra, Given Early to SSc-ILD Patients, Preserves Lung Health, Trial Data Show

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Applications Sought for Foundation Scholarships

Pain, Poor Sleep Can Lead to Lower Quality of Life for Patients

CAN10 Shows Promise in Early Studies, Supporting Planned Clinical Trial

C21 Improved Blood Flow in People With Raynaud’s Secondary to Scleroderma

Sleeping on an Inclined Bed Leads to an Enormous Wedgie

Scleroderma May Impair Ability to Eliminate Excess Cholesterol

Lung Involvement Increases Patients’ In-hospital Risk of Death, Costs

Subscribe to our mailing list

FDA Approves Actemra to Treat Adults With SSc-ILD

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Stem Cell Transplant Seen to Aid Skin and Lung Health in Severe SSc

ANCA‐associated Vasculitis Found to Cause Nerve Damage in SSc Patient

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Lower Back Pain Likely Drives Chronic Pain in Early Stages of Scleroderma

This Rare Disease Day, I’m Asking Others to Help Us Be Less Rare

Corticosteroids Plus Rituximab Not Likely to Injure Kidneys of SSc Patients

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Poor Core Stability Evident in SSc Patients, Affecting Life Quality

Fatigue, Raynaud’s Among Top Barriers to Exercise, Survey Finds

FDA Grants Priority Review to Esbriet for Unclassifiable Interstitial Lung Disease

Ziritaxestat Clinical Trials Discontinued

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Autoantibodies Against Telomeres May Help Identify SSc With Lung Disease

Work-related Crystalline Silica Exposure Linked to Higher Scleroderma Risk

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

How to Endure the Torture of Esophageal Testing

Tiny RNA Molecule Found to Regulate Collagen, Fibrosis in SSc-ILD

Differences in Activity of Various Genes May Drive Scleroderma

B-Cell Depletion Therapy May Be Effective

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Digital Ulcers, Raynaud’s and GI Symptoms Can Diminish Life Quality

NORD’s Caregiver Respite Program Continues Through Pandemic