November 18, 2020November 18, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
News, syndicated
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how ... Read more
November 18, 2020November 17, 2020
My Diagnosis Was Gut-wrenching, but Life Gets Better
Columns, Finding Strength – a Column by Lisa Weber
The phone rang on a Friday night. I answered it thinking the call probably was from another annoying solicitor. ... Read more
November 17, 2020
Lenabasum Eases Pulmonary Decline in dcSSc Patients on Long-term Immunosuppressants, Trial Finds
News
Updated results from the RESOLVE-1 Phase 3 clinical trial show that treatment with lenabasum reduces lung function decline in ... Read more
November 12, 2020November 12, 2020
Long-term Ofev Safely Slows Lung Function Decline in SSc-ILD Patients, Trial Data Show
News
Long-term treatment with Ofev (nintedanib) safely and effectively slows lung function decline in adults with interstitial lung disease (ILD) ... Read more
November 11, 2020November 9, 2020
Can Someone Pass Me Life’s Handbook?
Columns, Yes, I'm Still Enough – a Column by Tamia Moi-Thuk Shung
In my mom’s life, I am more than a caregiver. I became one at a time when she needed ... Read more
November 11, 2020November 9, 2020
Learning How to Recharge After Trauma
Columns, Finding Strength – a Column by Lisa Weber
Coming home from the hospital should be a time of smiles and celebration — especially after surviving multiple strokes ... Read more
November 10, 2020November 10, 2020
Ofev Slows Disease Progression in SSc-ILD, Data Shows, Supporting Therapy’s Benefits
News
Ofev (nintedanib) slows clinically relevant disease progression in adults with interstitial lung disease (ILD) associated with systemic sclerosis (SSc-ILD), according to an ... Read more
November 5, 2020November 5, 2020
Galectin-3 Protein May Be Blood Biomarker for Scleroderma and Like Diseases
News
Elevated blood levels of a protein called galectin-3 can help diagnose people with rheumatic diseases that include scleroderma, rheumatoid arthritis, ... Read more
November 4, 2020November 6, 2020
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
News, syndicated
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in ... Read more
November 3, 2020November 3, 2020
Genetic Profile Models Show Potential to Predict Person’s Scleroderma Risk
News
Genomic risk scores (GRS), which predict the likelihood of developing a condition based on a person’s genetic profile, successfully ... Read more
October 29, 2020October 29, 2020
High Levels of S100A12 Protein May Increase Severity of Scarring, ILD, Study Suggests
News
Elevated blood levels of the S100A12 protein, a type of danger signal released by skin cells, may contribute to ... Read more
October 27, 2020October 27, 2020
Overall Health Benefits Found With Abatacept in dcSSc Patients After 18 Months
News
Treatment with abatacept led to a reduction in skin stiffening and disability, as well as better overall health, in ... Read more

November 18, 2020November 18, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

News, syndicated

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about ... Read more

November 18, 2020November 17, 2020

My Diagnosis Was Gut-wrenching, but Life Gets Better

Columns, Finding Strength – a Column by Lisa Weber

The phone rang on a Friday night. I answered it thinking the call probably was from another annoying solicitor. Instead, it was the voice of the person who would ... Read more

November 17, 2020

Lenabasum Eases Pulmonary Decline in dcSSc Patients on Long-term Immunosuppressants, Trial Finds

News

Updated results from the RESOLVE-1 Phase 3 clinical trial show that treatment with lenabasum reduces lung function decline in adults with diffuse cutaneous scleroderma (dcSSc) who are on long-term immunosuppressant therapy. ... Read more

November 12, 2020November 12, 2020

Long-term Ofev Safely Slows Lung Function Decline in SSc-ILD Patients, Trial Data Show

News

Long-term treatment with Ofev (nintedanib) safely and effectively slows lung function decline in adults with interstitial lung disease (ILD) associated with systemic sclerosis (SSc-ILD), according to an early analysis of ... Read more

November 11, 2020November 9, 2020

Can Someone Pass Me Life’s Handbook?

Columns, Yes, I'm Still Enough – a Column by Tamia Moi-Thuk Shung

In my mom’s life, I am more than a caregiver. I became one at a time when she needed me the most. It was a role I willingly stepped ... Read more

November 11, 2020November 9, 2020

Learning How to Recharge After Trauma

Columns, Finding Strength – a Column by Lisa Weber

Coming home from the hospital should be a time of smiles and celebration — especially after surviving multiple strokes and spending nearly a week in the ICU, as I ... Read more

November 10, 2020November 10, 2020

Ofev Slows Disease Progression in SSc-ILD, Data Shows, Supporting Therapy’s Benefits

News

Ofev (nintedanib) slows clinically relevant disease progression in adults with interstitial lung disease (ILD) associated with systemic sclerosis (SSc-ILD), according to an exploratory analysis of the Phase 3 SENSCIS trial. These new ... Read more

November 5, 2020November 5, 2020

Galectin-3 Protein May Be Blood Biomarker for Scleroderma and Like Diseases

News

Elevated blood levels of a protein called galectin-3 can help diagnose people with rheumatic diseases that include scleroderma, rheumatoid arthritis, and systemic lupus erythematosus, a study suggests. The study, “Diagnostic ... Read more

November 4, 2020November 6, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit ... Read more

November 3, 2020November 3, 2020

Genetic Profile Models Show Potential to Predict Person’s Scleroderma Risk

News

Genomic risk scores (GRS), which predict the likelihood of developing a condition based on a person’s genetic profile, successfully distinguished people with scleroderma from those with other immune-mediated inflammatory ... Read more

October 29, 2020October 29, 2020

High Levels of S100A12 Protein May Increase Severity of Scarring, ILD, Study Suggests

News

Elevated blood levels of the S100A12 protein, a type of danger signal released by skin cells, may contribute to skin scarring and interstitial lung disease (ILD) in people with ... Read more

October 27, 2020October 27, 2020

Overall Health Benefits Found With Abatacept in dcSSc Patients After 18 Months

News

Treatment with abatacept led to a reduction in skin stiffening and disability, as well as better overall health, in people with early diffuse cutaneous scleroderma (dcSSc) who participated in ... Read more