Updates

August 16, 2019August 16, 2019
Close Monitoring Needed for SSc Patients With Rare Type of Interstitial Lung Disease, Study Shows

Evidence of pleuroparenchymal fibroelastosis (PPFE) — a rare type of interstitial lung disease — in people with systemic sclerosis (SSc) carries a negative prognosis, ... Read more
August 12, 2019August 12, 2019
Sarcopenia May Affect up to 55% of Patients with SSc, Study Suggests

Loss of muscle mass and strength — known as sarcopenia — may affect up to 55% of patients with systemic sclerosis (SSc), a study ... Read more
August 9, 2019August 9, 2019
High Levels of IL-6 Correlate with More Severe Skin Disease in SSc, Study Shows

Levels of a pro-inflammatory signaling molecule, called interleukin (IL)-6, are significantly high in skin lesions and blood samples of patients with systemic sclerosis (SSc), ... Read more
August 7, 2019August 7, 2019
Antibody Response Against HCMV Could Drive Scleroderma, Study Finds

Patients with scleroderma show more frequent and/or stronger immune responses against the human cytomegalovirus (HCMV), suggesting a role in disease development, according to new ... Read more
August 6, 2019August 2, 2019
Finding Hope in the Hospital Despite Adversity

Last week began like any other. I usually play catch-up on Monday, my favorite day of the week. It gives me a chance to ... Read more

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 ...

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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 ...
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 — ...
Puzzles Enable Me to ‘Armchair Travel’ with Scleroderma
July 23, 2019July 19, 2019
Lipotransfer Improves Mouth Function, Appearance, Quality of Life, Study Says
July 22, 2019July 22, 2019
More Accurate Way of Detecting Lung Disease Early in Scleroderma Patients Using HRCT Scans Proposed
July 19, 2019July 19, 2019
European Initiative Targets Diagnosis, Treatment of Rare Diseases
July 18, 2019July 18, 2019

Rituximab’s Immunosuppressive Effects Go Beyond B Cells in SSc, Study Finds
July 17, 2019July 17, 2019
Rituximab, an immunosuppressant antibody designed to target immune B cells, has widespread effects and ...
Navigating the Uncharted Waters of Scleroderma
July 16, 2019July 12, 2019
Lung Function Test May Offer Non-invasive Way to Detect Early PAH in SSc Patients
July 15, 2019July 15, 2019
First SSc Patient Dosed with Investigational Inhibitor KD025 in Phase 2 Trial
July 12, 2019July 12, 2019

Older Males Using Opioids, With Muscle Disease, at Higher Risk for Pseudo-obstructions, Study Reports
July 10, 2019July 10, 2019
Being older, male, using opioids, having the diffuse cutaneous disease type, and muscle disease, ...
Different SSc-specific Autoantibodies May Dictate Disease’s Presentation
July 8, 2019July 8, 2019
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
July 5, 2019July 4, 2019

News

Levels of Two Blood Proteins Predict Course of ILD in SSc, Data Suggest
July 3, 2019July 3, 2019
High levels of two proteins in the blood, called KL-6 and CCL-18, may work ...
Columns, Scleroderma and the Ordinary Girl

Is a ‘Normal Life’ Possible with Scleroderma?
July 2, 2019June 28, 2019
This morning I went for a walk. I’m trying to introduce this daily activity ...
News

Study Identifies Factors that Put Patients with Scleroderma at Risk for Organ Damage
June 28, 2019June 28, 2019
Older age, active digital ulcers, lung tissue scarring, muscle weakness, and increased levels of ...
News

Anti-cancer Therapy May Help Fight Inflammation in SSc Patients, Data Suggest
June 26, 2019June 26, 2019
Tagraxofusp, a medicine approved in the U.S. under the name Elzonris to treat a ...
News

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
June 26, 2019June 25, 2019
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy ...
News

Hyaluronidase Eased SSc Patient’s Problems with Eating, Dental Care, Report Says
June 24, 2019June 24, 2019
Injections of hyaluronidase, marketed as Hylenex, among other names, improved the ability to eat ...
News

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients
June 21, 2019June 21, 2019
Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to ...
News

Pirfenidone Fails to Improve Lung Function in SSc Patients with ILD, Trial Shows
June 19, 2019June 19, 2019
Treatment with pirfenidone fails to improve lung function in patients with systemic sclerosis (SSc)-associated ...
Columns, Scleroderma and the Ordinary Girl

How I’m Surviving My Worst Waiting Room
June 18, 2019June 14, 2019
I’ve had a rough run lately. Three separate kidney infections, medications to treat them, ...
News

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy
June 18, 2019June 18, 2019
People with rare diseases know that the right government policies can make a big ...
News

High Blood Viscosity Can Help Identify SSc Patients at Risk of PAH, Study Suggests
June 17, 2019June 17, 2019
Higher blood viscosity may help clinicians identify patients with systemic sclerosis at risk of ...
News

Lenabasum Promotes Sustained Improvements in Systemic Sclerosis Patients, Extension Study Shows
June 14, 2019June 14, 2019
People with diffuse cutaneous systemic sclerosis (dcSSc) treated with lenabasum keep improving after 21 months ...

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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