News

Adiponectin, an anti-inflammatory protein produced by adipose tissue, was seen to be elevated in the blood of people with sarcoidosis in a small study, and may help to ease disease severity.   The finding was…

The National Heart, Lung, and Blood Institute,  part of the National Institutes of Health (NIH), has given a $1.98 million grant to Wayne State University researchers to refine an antibody-based technology that can help to distinguish people with  sarcoidosis from tuberculosis patients and healthy individuals. Sarcoidosis is an…

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 people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…

The Foundation for Sarcoidosis Research is partnering with the American Lung Association for its sixth annual effort to raise awareness about sarcoidosis and provide resources for patients, caregivers, and clinicians during Sarcoidosis Awareness Month in April, and specifically to address concerns in the midst of the…

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. The event’s sponsor, the National Organization for Rare Disorders (NORD), said it will still take place at the…

Results of a Phase 1b/2a clinical study evaluating ATYR1923 in people with pulmonary sarcoidosis are likely to be delayed due to the COVID-19 pandemic, its developer, aTyr Pharma, announced. ATYR1923 is a first-in-class therapy being developed to possibly different types of interstitial lung diseases (ILDs) — a…

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 the approval of 1,000 new rare disease therapies by 2027. That group, the International Rare Diseases Research Consortium (IRDiRC) —…

Boehringer Ingelheim‘s Ofev (nintedanib) has been approved in the U.S. as the first treatment for chronic fibrosing interstitial lung diseases (ILDs) with a progressive phenotype. This approval by the United States Food and Drug Administration (FDA) includes sarcoidosis, autoimmune ILDs, unclassifiable ILDs, chronic hypersensitivity pneumonitis,…

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 lacking treatment. And federal incentives to boost treatment development for these rare diseases have primarily focused not on creating new…

In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…