March 17, 2020March 17, 2020

Choosing Caution Over Fear Amid the Coronavirus Panic

Columns, Invisible Chaos - a Column by Athena Merritt

More than 90 percent of people with sarcoidosis have lung involvement, which makes it hard for me not to worry about the recent coronavirus outbreak. Last week, the World ... Read more

March 16, 2020March 16, 2020

FDA Approves Ofev for Sarcoidosis and Other Interstitial Lung Diseases

News

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 ... Read more

March 13, 2020March 11, 2020

Sarcoidosis Can Be a Lonely Adventure, but It Doesn’t Have to Be

Columns, No Tears for Sarcoidosis - a Column by Charlton Harris

Take a minute to think about what’s really important in your life. I find myself doing that more often than I used to. I often think about the things ... Read more

March 11, 2020March 9, 2020

Good Intentions Gone Awry with Sarcoidosis

Columns, Life Altered - a Column by Kate Spencer

I began the year with good intentions. I simply wanted to invite more fun and less stress into my life. The first sign that my intentions for 2020 were ... Read more

March 10, 2020March 6, 2020

When Restful Sleep Is Elusive, Here’s What I Do

Columns, Invisible Chaos - a Column by Athena Merritt

Whenever I see my friend Laurie’s cats or my niece Nautica’s dog sleeping I think, “I wish I could sleep like that.” Their pets can drop into a blissful ... Read more

March 9, 2020March 9, 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

March 6, 2020March 5, 2020

A Surprise Trip Made Me Realize My Daughter’s Growing Up

Columns, No Tears for Sarcoidosis - a Column by Charlton Harris

My daughter always reminds me that I’m just “Dad.” At 20 years old, she believes she knows the ways of the world. No matter what advice she asks for, ... Read more

March 4, 2020March 4, 2020

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

News

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 ... Read more

March 3, 2020February 28, 2020

Will Unplugging from Technology Help Me Break Bad Habits?

Columns, Invisible Chaos - a Column by Athena Merritt

I recently saw an episode of “Family Feud” that made me nostalgic for the good old days — or what my nieces and nephews call ancient times. Contestants on ... Read more

March 2, 2020March 2, 2020

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

News

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, ... Read more

February 28, 2020February 26, 2020

A Hospitalization Reminded Me There Are Good Lessons in the Toughest Challenges

Columns, No Tears for Sarcoidosis - a Column by Charlton Harris

Pulmonary sarcoidosis is a sneaky character. Last week, I wasn’t feeling like myself. I was more out of breath than usual. I felt weak and could tell something wasn’t ... Read more

February 26, 2020February 26, 2020

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

News

Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. ... Read more