Updates

May 10, 2021May 7, 2021
A Tale of Woe From a Human Pin Cushion

“Don’t worry. This will feel like a pinch.” Sitting in the sterile room with a tourniquet wrapped tightly around my arm, I stared intently at ... Read more
May 7, 2021May 7, 2021
The Mother Lode: Highlighting the Special Moms of Scleroderma Patients

Along the street lined with neatly planned townhouses, an effervescent spirit zigzagged through the households at midday. Every person under the age of 8, including ... Read more
May 6, 2021May 6, 2021
Scientists Identify Scar-forming Mechanisms With Implications for Scleroderma

Scientists have identified a mechanism of scar formation in the skin, and demonstrated in mouse models a way to heal wounds to create normal skin ... Read more
May 4, 2021May 4, 2021
Genetic Activity in Skin May Define Stages of Juvenile Localized Scleroderma

Distinct profiles of gene activity in skin samples distinguish different disease stages in juvenile localized scleroderma, a study suggests. These profiles did not necessarily ... Read more
April 30, 2021May 7, 2021
Relying on Gravity: Welcome to ‘Skintight,’ a New Column

(Sung to “Defying Gravity,” with apologies to Stephen Schwartz.) Something has changed within me Some parts are getting tight I’m through with tiny buttons Give ... 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

A Tale of Woe From a Human Pin Cushion

The Mother Lode: Highlighting the Special Moms of Scleroderma Patients

Scientists Identify Scar-forming Mechanisms With Implications for Scleroderma

Genetic Activity in Skin May Define Stages of Juvenile Localized Scleroderma

Relying on Gravity: Welcome to ‘Skintight,’ a New Column

Computer Algorithm Highly Accurate at Detecting PAH in Scleroderma

Study Differentiates Gene Activity Between Scleroderma, Lung Cancer

Stem Cells Can Augment Fat Grafts in Treating Facial Atrophy

Vasohibin-1 Levels May Serve as Biomarker for Lung, Skin Scarring

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

Scleroderma Foundation Awards 8 Grants to Advance Research Priorities

Subscribe to our mailing list

Galectin‐10 Blood Levels Linked With Inflammation, Lung Remodeling in Study

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

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

iBio Selects Fusion Protein as Lead Candidate for New Scleroderma Treatment

A Tale of Woe From a Human Pin Cushion

The Mother Lode: Highlighting the Special Moms of Scleroderma Patients

Scientists Identify Scar-forming Mechanisms With Implications for Scleroderma

Genetic Activity in Skin May Define Stages of Juvenile Localized Scleroderma

Relying on Gravity: Welcome to ‘Skintight,’ a New Column

Computer Algorithm Highly Accurate at Detecting PAH in Scleroderma

Study Differentiates Gene Activity Between Scleroderma, Lung Cancer

Stem Cells Can Augment Fat Grafts in Treating Facial Atrophy

Vasohibin-1 Levels May Serve as Biomarker for Lung, Skin Scarring

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

Scleroderma Foundation Awards 8 Grants to Advance Research Priorities

Subscribe to our mailing list

Galectin‐10 Blood Levels Linked With Inflammation, Lung Remodeling in Study

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

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