Updates

October 14, 2019October 14, 2019
Early Immunosuppressive Treatment May Prevent ILD Progression in SSc Patients, Study Suggests

Immunosuppressive treatment of early-stage interstitial lung disease (ILD) in people with systemic sclerosis may be a potential therapeutic option to prevent ILD progression, ... Read more
October 11, 2019October 11, 2019
Ofev Granted FDA Breakthrough Therapy Status for Progressive Interstitial Lung Disease Treatment

The U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation to Ofev (nintedanib) as a potential therapy for progressive fibrosing interstitial lung disease (ILD) — which also affects ... Read more
October 9, 2019October 9, 2019
Experts Issue Recommendations for Managing Juvenile Localized Scleroderma

Referral to specialized centers, focusing on skin lesions as well as joint and neurological manifestations, and treatment with corticosteroids and disease-modifying antirheumatic ... Read more
October 8, 2019October 4, 2019
With Scleroderma, Exercise Comes at a Cost

My cardiologist has given me the OK to go back to the gym. I’ve been waiting for his clearance for a long time. Working ... Read more
October 7, 2019October 7, 2019
Phase 2 Study of Bermekimab in Treating Scleroderma Enrolls 1st Patient

The first person has been enrolled in a clinical trial evaluating the investigational therapy bermekimab in adults with scleroderma, XBiotech, the developer of bermekimab, ... Read more

News

Estrogen Blocks Profibrotic Signals Driving Scleroderma, Study Suggests
October 4, 2019October 4, 2019
Blocking the activity of estrogen may worsen skin fibrosis in people with scleroderma, according ...
News

Raynaud’s Association Joins October Awareness Campaign, Notes Scleroderma Link
October 2, 2019October 2, 2019
Raynaud’s Association is launching several activities during October to raise awareness about Raynaud’s phenomenon, ...
Columns, Scleroderma and the Ordinary Girl

Finding the Glimmer of Gold Amid the Sludge of Scleroderma
October 1, 2019September 27, 2019
It has been a long few weeks of dealing with recurrent benign paroxysmal positional ...
News

Modified Inflammatory Protein May Help Reverse Fibrosis in Scleroderma, Mouse Study Suggests
September 30, 2019September 30, 2019
A modified version of the inflammatory protein TRAIL might be able to reverse fibrosis ...
News

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC
September 27, 2019September 27, 2019
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, ...
News

Processa Enters Agreement to Develop HT-100 as Possible Fibrotic Disease Treatment
September 23, 2019September 23, 2019
Processa Pharmaceuticals announced it has entered into a global licensing agreement with Akashi Therapeutics ...

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FDA Approves Ofev to Slow Lung Function Decline in SSc-ILD Patients
September 10, 2019September 10, 2019
The U.S. Food and Drug Administration (FDA) has approved Ofev (nintedanib) as the first therapy to ...
Grappling with My Identity as a Scleroderma Patient
September 10, 2019September 5, 2019
It’s been an eventful couple of weeks. I am currently dealing with several crises ...
Problems in Small Airways Can Be Common in Scleroderma and Should Be Checked, Study Says
September 4, 2019September 4, 2019
‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases
September 2, 2019August 30, 2019
At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing
August 29, 2019August 28, 2019
Potential Cannabidiol Treatment EHP-101 Shows Safety in Early Trial, Study in Scleroderma Patients Being Readied
August 28, 2019August 28, 2019

Newer EUSTAR-AI Scale Ably Predicts Short-term Risk of SSc Progression, Study Finds
August 26, 2019August 26, 2019
The European Scleroderma Trials and Research Group (EUSTAR) revised activity index scale, known as ...
Vasodilators and Aspirin May Protect Hearts of Systemic Scleroderma Patients, Study Suggests
August 23, 2019August 23, 2019
Uric Acid Levels in Blood Predicts PAH Risk and Outcomes in Scleroderma Patients, Study Reports
August 21, 2019August 21, 2019
When Choosing My Medical Team, It’s All About Attitude
August 20, 2019August 16, 2019

Patient-reported Symptoms May Reflect Changes in SSc Activity, Study Suggests
August 20, 2019August 30, 2019
Patient-reported symptoms — specifically those related to blood vessel, skin, and lung function — ...
Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases
August 19, 2019August 19, 2019
Close Monitoring Needed for SSc Patients With Rare Type of Interstitial Lung Disease, Study Shows
August 16, 2019August 16, 2019

News

Sarcopenia May Affect up to 55% of Patients with SSc, Study Suggests
August 12, 2019August 12, 2019
Loss of muscle mass and strength — known as sarcopenia — may affect up ...
News

High Levels of IL-6 Correlate with More Severe Skin Disease in SSc, Study Shows
August 9, 2019August 9, 2019
Levels of a pro-inflammatory signaling molecule, called interleukin (IL)-6, are significantly high in skin ...
News

Antibody Response Against HCMV Could Drive Scleroderma, Study Finds
August 7, 2019August 7, 2019
Patients with scleroderma show more frequent and/or stronger immune responses against the human cytomegalovirus ...
Columns, Scleroderma and the Ordinary Girl

Finding Hope in the Hospital Despite Adversity
August 6, 2019August 2, 2019
Last week began like any other. I usually play catch-up on Monday, my favorite ...
News

ACE Inhibitors Raise Risk of Renal Crisis in Some SSc Patients, Study Says
August 5, 2019August 5, 2019
Systemic sclerosis (SSc) patients with elevated protein in their urine (proteinuria) who are using ...
News

Specific Autoantibody Protects Some SSc Patients Against Cancer, Study Suggests
August 2, 2019August 2, 2019
Some people with systemic sclerosis (SSc) are protected from cancer development by the presence ...
News

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate
August 1, 2019
Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, ...
News

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
August 1, 2019August 1, 2019
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of ...
News

Abatacept Improves Overall Health in dcSSc, but Fails To Reduce Skin Thickening, Study Finds
July 31, 2019July 31, 2019
Abatacept, a potential treatment for people with early-stage diffuse cutaneous systemic sclerosis (dcSSc), showed ...
News

FDA Advisory Committee Recommends Ofev Approval for Treatment of Interstitial Lung Disease
July 29, 2019July 29, 2019
The Arthritis Advisory Committee of the U.S. Food and Drug Administration (FDA) has recommended ...
News

Some dcSSC Patients’ Skin Issues Returned after Reducing or Ending CellCept, Study Says
July 26, 2019July 26, 2019
A subgroup of patients with rapidly progressive diffuse cutaneous scleroderma (dcSSc) experienced a relapse ...
News

Blood Levels of Certain Immune Cells May be Linked to Disease Severity in Systemic Sclerosis, Study Says
July 24, 2019July 24, 2019
Blood levels of three types of immune cells — neutrophils, lymphocytes, and monocytes — ...

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 ... Read more

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