April 8, 2020April 8, 2020
NORD’s Advice on COVID-19: You’re Stronger Than You Think
News, syndicated
First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you ... Read more
April 6, 2020April 6, 2020
Phase 2 Trial to Test Cannabidiol-derived EHP-101 in Diffuse Cutaneous Scleroderma
News
Emerald Health Pharmaceuticals has launched a clinical trial evaluating EHP-101, its investigational cannabidiol-derived therapy, in adults with diffuse ... Read more
March 30, 2020March 30, 2020
Canada Clears EHP-101, Possible Cannabidiol-derived Treatment
News
The active ingredient in EHP-101 — known as VCE-004.8, derived from synthetic cannabidiol — is not classified as a controlled substance ... Read more
March 27, 2020March 27, 2020
NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum
News
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been ... Read more
March 25, 2020March 25, 2020
Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
News
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy ... Read more
March 23, 2020March 23, 2020
Subset of Immune B-Cells Linked to Vascular Damage in Some Patients, Study Suggests
News
Levels of a subtype of immune B-cells in the blood are increased in some people with scleroderma and associated ... Read more
March 20, 2020March 20, 2020
Vitamin E, Pentoxifylline and TheraBite System Ease Lockjaw, Small Study Suggests
News
Using vitamin E, pentoxifylline, and the TheraBite Jaw Motion Rehabilitation System may help reduce trismus — commonly called lockjaw ... Read more
March 18, 2020March 18, 2020
Emerald Health Awarded 6 Patents for Potential Cannabis Treatments
News
Emerald Health Pharmaceuticals (EHP), the company developing the synthetic cannabis-derived EHP-101 as a treatment for scleroderma, has been ... Read more
March 16, 2020March 27, 2020
Blood Levels of Fibrotic Protein Tied to SSc-ILD, May Serve as Biomarker
News
Higher-than-normal blood levels of squamous cell carcinoma antigen 1 (SCCA1), a pro-fibrotic protein, are associated with a greater risk ... Read more
March 13, 2020March 13, 2020
Heart, Kidney Imaging Could Detect Fibrosis in Scleroderma, Study Finds
News
Heart and kidney imaging may help detect fibrosis, or scarring, in asymptomatic people with scleroderma, and could be useful in ... Read more
March 11, 2020March 11, 2020
New Ultrasound Technique Detects Early Skin Changes in Scleroderma, Study Suggests
News
A new non-invasive ultrasound imaging technique can detect changes in skin elasticity that are predictive of disease progression in ... Read more
March 10, 2020March 10, 2020
Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
News
The number of treatments for children with rare diseases has grown over the past decade, according to a new study. ... Read more

April 8, 2020April 8, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

News, syndicated

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most ... Read more

April 6, 2020April 6, 2020

Phase 2 Trial to Test Cannabidiol-derived EHP-101 in Diffuse Cutaneous Scleroderma

News

Emerald Health Pharmaceuticals has launched a clinical trial evaluating EHP-101, its investigational cannabidiol-derived therapy, in adults with diffuse cutaneous systemic sclerosis (dcSSc). “This is our first Phase 2 clinical ... Read more

March 30, 2020March 30, 2020

Canada Clears EHP-101, Possible Cannabidiol-derived Treatment

News

The active ingredient in EHP-101 — known as VCE-004.8, derived from synthetic cannabidiol — is not classified as a controlled substance under Canada’s Controlled Drug and Substance Act (CDSA), the potential ... Read more

March 27, 2020March 27, 2020

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

News

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. ... Read more

March 25, 2020March 25, 2020

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

News

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see ... Read more

March 23, 2020March 23, 2020

Subset of Immune B-Cells Linked to Vascular Damage in Some Patients, Study Suggests

News

Levels of a subtype of immune B-cells in the blood are increased in some people with scleroderma and associated with lower respiratory function, higher blood pressure in the lungs, ... Read more

March 20, 2020March 20, 2020

Vitamin E, Pentoxifylline and TheraBite System Ease Lockjaw, Small Study Suggests

News

Using vitamin E, pentoxifylline, and the TheraBite Jaw Motion Rehabilitation System may help reduce trismus — commonly called lockjaw — in people with scleroderma, a study in two patients ... Read more

March 18, 2020March 18, 2020

Emerald Health Awarded 6 Patents for Potential Cannabis Treatments

News

Emerald Health Pharmaceuticals (EHP), the company developing the synthetic cannabis-derived EHP-101 as a treatment for scleroderma, has been granted six patents related to 25 new molecules derived from cannabidiol (CBD) ... Read more

March 16, 2020March 27, 2020

Blood Levels of Fibrotic Protein Tied to SSc-ILD, May Serve as Biomarker

News

Higher-than-normal blood levels of squamous cell carcinoma antigen 1 (SCCA1), a pro-fibrotic protein, are associated with a greater risk of interstitial lung disease (ILD) among people with systemic sclerosis (SSc-ILD), a ... Read more

March 13, 2020March 13, 2020

Heart, Kidney Imaging Could Detect Fibrosis in Scleroderma, Study Finds

News

Heart and kidney imaging may help detect fibrosis, or scarring, in asymptomatic people with scleroderma, and could be useful in routine evaluations for people with the disease, a study suggests. ... Read more

March 11, 2020March 11, 2020

New Ultrasound Technique Detects Early Skin Changes in Scleroderma, Study Suggests

News

A new non-invasive ultrasound imaging technique can detect changes in skin elasticity that are predictive of disease progression in scleroderma, a recent pilot study suggests. Early detection of these ... Read more

March 10, 2020March 10, 2020

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

News

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still ... Read more