Updates

September 10, 2019September 10, 2019
FDA Approves Ofev to Slow Lung Function Decline in SSc-ILD Patients

The U.S. Food and Drug Administration (FDA) has approved Ofev (nintedanib) as the first therapy to slow lung function decline in people with interstitial lung disease ... Read more
September 10, 2019September 5, 2019
Grappling with My Identity as a Scleroderma Patient

It’s been an eventful couple of weeks. I am currently dealing with several crises at the same time, all of which include seriously unwell ... Read more
September 4, 2019September 4, 2019
Problems in Small Airways Can Be Common in Scleroderma and Should Be Checked, Study Says

People with systemic scleroderma (SSc) can be prone to problems in the small airways, which can contribute to the cases of lung disease ... Read more
September 2, 2019August 30, 2019
‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. ... Read more
August 29, 2019August 28, 2019
At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially ... Read more

News

Potential Cannabidiol Treatment EHP-101 Shows Safety in Early Trial, Study in Scleroderma Patients Being Readied
August 28, 2019August 28, 2019
EHP-101, an oral cannabidiol treatment candidate for people with scleroderma (SSc) and multiple sclerosis (MS), ...
News

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 ...
News

Vasodilators and Aspirin May Protect Hearts of Systemic Scleroderma Patients, Study Suggests
August 23, 2019August 23, 2019
Use of vasodilators — medications that trigger the widening and relaxing of blood vessels ...
News

Uric Acid Levels in Blood Predicts PAH Risk and Outcomes in Scleroderma Patients, Study Reports
August 21, 2019August 21, 2019
Higher than usual serum levels of uric acid are linked to a greater risk ...
Columns, Scleroderma and the Ordinary Girl

When Choosing My Medical Team, It’s All About Attitude
August 20, 2019August 16, 2019
In my last column, I promised to share my experience with a new cardiologist, ...
News

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 — ...

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Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases
August 19, 2019August 19, 2019
Imagine living your whole life with a painful disease so rare that only 25 ...
Close Monitoring Needed for SSc Patients With Rare Type of Interstitial Lung Disease, Study Shows
August 16, 2019August 16, 2019
Evidence of pleuroparenchymal fibroelastosis (PPFE) — a rare type of interstitial lung disease — ...
Sarcopenia May Affect up to 55% of Patients with SSc, Study Suggests
August 12, 2019August 12, 2019
High Levels of IL-6 Correlate with More Severe Skin Disease in SSc, Study Shows
August 9, 2019August 9, 2019
Antibody Response Against HCMV Could Drive Scleroderma, Study Finds
August 7, 2019August 7, 2019
Finding Hope in the Hospital Despite Adversity
August 6, 2019August 2, 2019

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 ...
Specific Autoantibody Protects Some SSc Patients Against Cancer, Study Suggests
August 2, 2019August 2, 2019
Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate
August 1, 2019
Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
August 1, 2019August 1, 2019

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 ...
FDA Advisory Committee Recommends Ofev Approval for Treatment of Interstitial Lung Disease
July 29, 2019July 29, 2019
Some dcSSC Patients’ Skin Issues Returned after Reducing or Ending CellCept, Study Says
July 26, 2019July 26, 2019

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 — ...
Columns, Scleroderma and the Ordinary Girl

Puzzles Enable Me to ‘Armchair Travel’ with Scleroderma
July 23, 2019July 19, 2019
I complete many jigsaw puzzles as I rest in my recliner. I find puzzles ...
News

Lipotransfer Improves Mouth Function, Appearance, Quality of Life, Study Says
July 22, 2019July 22, 2019
Lipotransfer — a procedure in which fat tissue is injected into facial scar tissue ...
News

More Accurate Way of Detecting Lung Disease Early in Scleroderma Patients Using HRCT Scans Proposed
July 19, 2019July 19, 2019
A new computerized method to analyze high resolution computed tomography (HRCT) scans may help ...
News

European Initiative Targets Diagnosis, Treatment of Rare Diseases
July 18, 2019July 18, 2019
A new international consortium based in Paris, and funded largely by the 28-member European ...
News

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 ...
Columns, Scleroderma and the Ordinary Girl

Navigating the Uncharted Waters of Scleroderma
July 16, 2019July 12, 2019
I like to read online about how other patients experience systemic scleroderma, especially when ...
News

Lung Function Test May Offer Non-invasive Way to Detect Early PAH in SSc Patients
July 15, 2019July 15, 2019
Measuring the lungs’ diffusing capacity for carbon monoxide (DLCO) may improve the ability of ...
News

First SSc Patient Dosed with Investigational Inhibitor KD025 in Phase 2 Trial
July 12, 2019July 12, 2019
Kadmon Holdings started a Phase 2 clinical trial testing its inhibitor KD025, with the first ...
News

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, ...
News

Different SSc-specific Autoantibodies May Dictate Disease’s Presentation
July 8, 2019July 8, 2019
Different types of systemic sclerosis-related autoantibodies may lead to different presentations of the disease, ...
News

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
July 5, 2019July 4, 2019
It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in ...

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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