Updates

April 6, 2020April 6, 2020
Joint Campaign to Raise Awareness About Sarcoidosis and COVID-19

The Foundation for Sarcoidosis Research is partnering with the American Lung Association for its sixth annual effort to raise awareness about sarcoidosis and provide ... Read more
April 1, 2020April 1, 2020
NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

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 ... Read more
March 31, 2020March 27, 2020
Changing Tactics for National Sarcoidosis Awareness Month

National Sarcoidosis Awareness Month begins on April 1 without the fanfare of years past. We can’t participate in walks. We can’t gather for events ... Read more
March 30, 2020March 30, 2020
Pandemic Likely to Delay Results of Trial into Pulmonary Sarcoidosis Treatment

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 ... Read more
March 27, 2020March 25, 2020
Social Distancing Could Be Good for More than Only Physical Health

Social distancing is the new norm. It reminds me of the two months I spent in the hospital after my first spontaneous pneumothorax. While ... Read more

Columns, Life Altered - a Column by Kate Spencer

Letting Go of ‘Should’ with Sarcoidosis
March 25, 2020March 20, 2020
I read a magazine article years ago shortly after my sarcoidosis diagnosis. It covered ...
Columns, Invisible Chaos - a Column by Athena Merritt

Ideas for Sarcoidosis Patients Who Are Self-isolating and Bored
March 24, 2020March 23, 2020
After all of my efforts to remain germ-free I was reminded of a couple ...
News

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
March 23, 2020March 23, 2020
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate ...
Columns, No Tears for Sarcoidosis - a Column by Charlton Harris

Managing Sarcoidosis and Mental Health During the COVID-19 Crisis
March 20, 2020March 19, 2020
This has been a rough week, to say the least. Last week, I lost ...
Columns, Invisible Chaos - a Column by Athena Merritt

Choosing Caution Over Fear Amid the Coronavirus Panic
March 17, 2020March 17, 2020
More than 90 percent of people with sarcoidosis have lung involvement, which makes it ...
News

FDA Approves Ofev for Sarcoidosis and Other Interstitial Lung Diseases
March 16, 2020March 16, 2020
Boehringer Ingelheim‘s Ofev (nintedanib) has been approved in the U.S. as the first treatment ...

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Sarcoidosis Can Be a Lonely Adventure, but It Doesn’t Have to Be
March 13, 2020March 11, 2020
Take a minute to think about what’s really important in your life. I find ...
Good Intentions Gone Awry with Sarcoidosis
March 11, 2020March 9, 2020
I began the year with good intentions. I simply wanted to invite more fun ...
When Restful Sleep Is Elusive, Here’s What I Do
March 10, 2020March 6, 2020
Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
March 9, 2020March 9, 2020
A Surprise Trip Made Me Realize My Daughter’s Growing Up
March 6, 2020March 5, 2020
Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
March 4, 2020March 4, 2020

Will Unplugging from Technology Help Me Break Bad Habits?
March 3, 2020February 28, 2020
I recently saw an episode of “Family Feud” that made me nostalgic for the ...
Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
March 2, 2020March 2, 2020
A Hospitalization Reminded Me There Are Good Lessons in the Toughest Challenges
February 28, 2020February 26, 2020
Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
February 26, 2020February 26, 2020

This Is What Makes Me Rare with Sarcoidosis
February 26, 2020February 24, 2020
I have a rare health condition called sarcoidosis, which causes extreme fatigue, joint pain, ...
Let’s Raise Our Voices for Sarcoidosis on Rare Disease Day
February 25, 2020February 21, 2020
Imbalance in Certain Immune Cells May Promote Pulmonary Sarcoidosis, Study Suggests
February 24, 2020February 24, 2020

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

Appreciating the Things Sarcoidosis Tries to Take
February 21, 2020February 20, 2020
I’ve had an unusually difficult week. To put it plainly, the events of this ...
News

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
February 20, 2020March 3, 2020
An abundance of events are afoot around the world to mark Rare Disease Day ...
Columns, Life Altered - a Column by Kate Spencer

I’m Feeling Good About Doing Nothing and Just Being
February 19, 2020February 14, 2020
I often am my own worst enemy. Well, sarcoidosis is actually my worst enemy. ...
Columns, Invisible Chaos - a Column by Athena Merritt

Rainy Days Always Get Me Down
February 18, 2020February 14, 2020
When it comes to managing sarcoidosis, rain feels like another obstacle in my day. ...
News

Arthritis Medicine Tofacitinib May Be Effective in Treating Multiorgan Sarcoidosis, Study Reports
February 17, 2020February 17, 2020
The arthritis medicine Xeljanz (tofacitinib) may be an effective therapeutic alternative to conventional medications for ...
Columns, No Tears for Sarcoidosis - a Column by Charlton Harris

Sarcoidosis Doesn’t Play Fair, So Neither Should You
February 14, 2020February 13, 2020
In 2003, I lost my mother suddenly. I still remember the day like it ...
Columns, Life Altered - a Column by Kate Spencer

Taking a Road Trip to the Atlantic Coast
February 12, 2020February 10, 2020
My husband is heading out on an impromptu business trip. Coincidentally, his destination is ...
Columns, Invisible Chaos - a Column by Athena Merritt

A Winter Walk Taught Me Some Unexpected Lessons
February 11, 2020February 7, 2020
I know that getting outdoors is good for my health and my sarcoidosis management. ...
News

FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
February 10, 2020February 10, 2020
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 ...

October 3, 2016October 3, 2016

High Calcium Levels, Bone Marrow Sarcoidosis May Be Associated

News

Elevated levels of calcium in blood and urine can be associated with the development of bone marrow sarcoidosis, according to a report published in the journal Biomarker Research. The study, “Hypercalcemia Associated With Isolated Bone Marrow Sarcoidosis In A ... Read more

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