Updates

February 25, 2021February 25, 2021
Lower Back Pain Likely Drives Chronic Pain in Early Stages of Scleroderma

Although not a distinctive symptom of scleroderma, lower back pain is a major contributor to the chronic pain felt by people in the earliest ... Read more
February 24, 2021February 19, 2021
This Rare Disease Day, I’m Asking Others to Help Us Be Less Rare

“You’re imperfect, and you’re wired for struggle, but you are worthy of love and belonging.” Brené Brown said these words, but they belong to ... Read more
February 23, 2021February 23, 2021
Corticosteroids Plus Rituximab Not Likely to Injure Kidneys of SSc Patients

High doses of corticosteroids may be given alongside rituximab, used at lower doses, without affecting the kidneys of people with scleroderma, a ... Read more
February 22, 2021February 22, 2021
Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, ... Read more
February 19, 2021February 19, 2021
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted ... 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

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

Subscribe to our mailing list

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

When My Disease Attacks, I Press the Reset Button and Move Forward

Finger Sweating Tests May Help Diagnose Scleroderma

UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care

TMB-003 Therapy to Reduce Scarring Wins FDA Orphan Drug Designation

Blood Levels of Protein Common to Lungs May Mark Progression in SSc-ILD

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

Analysis: Therapies Equally Effective in African Americans with SSc-ILD

Acknowledging That This Time, I Need Help

Tracleer for Digital Ulcers Lowers PH Risk in Scleroderma, Study Finds

Osteopontin Protein May Be Cause of Lung Scarring in Scleroderma

Scleroderma Patients at Higher Risk of Cardiovascular Diseases, Review Finds

Self-love Is the Best Love

More Than 40% of Scleroderma Patients Have Bone Density Loss, Study Finds

Brain Cancer Found in 2 Immunosuppressed Scleroderma Patients, Case Series Reports

Standing By My Mother During Health Challenges

Meds or No Meds?

iBio Selects Fusion Protein as Lead Candidate for New Scleroderma Treatment

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

Subscribe to our mailing list

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

When My Disease Attacks, I Press the Reset Button and Move Forward

Finger Sweating Tests May Help Diagnose Scleroderma

UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care

TMB-003 Therapy to Reduce Scarring Wins FDA Orphan Drug Designation

Blood Levels of Protein Common to Lungs May Mark Progression in SSc-ILD

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

Analysis: Therapies Equally Effective in African Americans with SSc-ILD

Acknowledging That This Time, I Need Help

Tracleer for Digital Ulcers Lowers PH Risk in Scleroderma, Study Finds

Osteopontin Protein May Be Cause of Lung Scarring in Scleroderma

Scleroderma Patients at Higher Risk of Cardiovascular Diseases, Review Finds

Self-love Is the Best Love

More Than 40% of Scleroderma Patients Have Bone Density Loss, Study Finds

Brain Cancer Found in 2 Immunosuppressed Scleroderma Patients, Case Series Reports

Standing By My Mother During Health Challenges

Meds or No Meds?