Updates

March 18, 2019March 18, 2019
Unusual Case Cites Infection as Possible Trigger of Sarcoidosis

A study reporting the case of a sarcoidosis patient infected with the bacteria Borrelia burgdorferi highlights the importance of maintaining an increased awareness about potential infectious ... Read more
March 15, 2019March 15, 2019
Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn

Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will suffer deeply if Britain leaves the European Union (EU), as ... Read more
March 12, 2019March 12, 2019
Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist

With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn screening, to vaccinations, gene therapies and euthanasia. But rare diseases ... Read more
March 11, 2019March 11, 2019
Investigational Therapy ATYR1923 May Relieve Lung Inflammation, Preclinical Data Show

The investigational therapy ATYR1923 for pulmonary sarcoidosis may help decrease lung inflammation by halting the infiltration of immune cells called neutrophils into the lungs, ... Read more
March 6, 2019March 6, 2019
NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research

Rare diseases affect about 30 million Americans — roughly the same number as those with type 2 diabetes. Yet only 5 percent of the ... Read more

News

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
February 25, 2019February 25, 2019
The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government ...
News

Vienna to Host RARE2019 Meeting on Rare Diseases
February 20, 2019February 20, 2019
About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city ...
News

Familial Sarcoidosis Prevalent in Certain Populations Worldwide, Review Suggests
February 18, 2019February 18, 2019
A literature review of research performed in specific populations from countries worldwide estimated a ...
News

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide
February 12, 2019February 12, 2019
Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities ...
News

Uncommon Case of Sarcoidosis Found in ARDS Patient, Study Reports
February 11, 2019February 11, 2019
A case study diagnosing sarcoidosis upon autopsy in a patient with acute respiratory distress syndrome ...
News

FDA Revising ‘Draft Guidance’ on Developing Treatments for Rare Diseases
January 31, 2019January 31, 2019
The U.S. Food and Drug Administration (FDA) is updating its 2015 draft guidelines for ...

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Sarcoidosis Death Rate Rose in US Between 1999 and 2016, Study Reports
January 28, 2019January 28, 2019
Deaths attributed to sarcoidosis as the primary underlying cause increased between 1999 and 2016 ...
Dutch Cardiologists Using Ventripoint’s AI Tool for Early Diagnosis of PH in Sarcoidosis
January 21, 2019January 21, 2019
Two cardiologists in the Netherlands are using an artificial intelligence (AI) tool called the ...
Xeljanz Successfully Used to Treat Patient with Disfiguring Sarcoidosis
January 14, 2019January 14, 2019
Impaired Lung Function Linked to Higher Risk of Dementia, Mild Cognitive Decline Later in Life
January 7, 2019January 7, 2019
Better Quality of Life Top Goal of Treatment, European Patients Say in Survey
January 4, 2019February 4, 2019
Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish
December 21, 2018December 21, 2018

aTyr, Foundation for Sarcoidosis Research Announce Phase 1b/2a Trial For ATYR1923
December 18, 2018December 18, 2018
After the U.S. Food and Drug Administration accepted aTyr Pharma‘s investigational new drug application for ATYR1923, ...
Lymphopaenia a Noninvasive and Useful Biomarker for Diagnosing Ocular Sarcoidosis, Study Suggests
December 4, 2018December 4, 2018
Researchers Urge More Study on How Sarcoidosis, Psoriasis May Raise Risk of Other Conditions
November 27, 2018November 27, 2018
Researchers Report Cutaneous Sarcoidosis in Patient Treated Earlier for Hodgkin’s
November 20, 2018November 20, 2018

Rituxan Successfully Treated Refractory Neurosarcoidosis, Case Report States
November 13, 2018November 13, 2018
Treatment with Rituxan (rituximab) provided marked disease remission and was well-tolerated by three patients ...
Benefits of Adalimumab (Humira) in Verrucous Sarcoidosis Cited in Case Report
November 6, 2018November 6, 2018
#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach
October 30, 2018October 30, 2018

News

Burden of Cardiac Arrhythmias Increasing in Sarcoidosis Patients, US Study Reports
October 25, 2018October 25, 2018
Cardiac arrhythmias are increasing among sarcoidosis patients, and they are linked with higher hospital ...
News

MRI Screenings Show Spinal Sarcoidois More Common Than Previously Thought, Study Reports
October 23, 2018October 23, 2018
Highly sensitive magnetic resonance imaging (MRI) of the spinal cord shows that spine involvement ...
News

Gram-negative Bacteria Increase ICU Admission, Deaths in Sarcoidosis, ILDs
October 18, 2018October 18, 2018
The presence of certain types of bacteria, specifically gram-negative bacteria other than Pseudomonas aeruginosa, ...
News

Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments
October 9, 2018October 9, 2018
Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced ...
News

Cutaneous Sarcoidosis Linked with Recurrence of Breast Cancer in Case Study
October 4, 2018October 4, 2018
A 49-year-old woman in Australia was simultaneously diagnosed with a rare case of cutaneous ...
News

Phase 1/2 Trial to Test aTyr Pharma’s ATYR1923 in Pulmonary Sarcoidosis Patients
October 2, 2018October 2, 2018
aTyr Pharma, which developing therapies to modulate immune pathways involved in lung diseases, has ...
News

Sarcoidosis Patients More Likely to Develop Heart Rhythm Disorders, Large Retrospective Study Finds
September 28, 2018September 28, 2018
Patients with sarcoidosis are more likely to have heart rhythm disorders, specifically ventricular tachycardia, ...
News

#NORDSummit – More Than 700 Expected to Attend Oct. 15-16 Rare Disease Summit in Washington
September 24, 2018September 24, 2018
More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to ...
News

Rare Case of Sternoclavicular Joint Arthritis in Sarcoidosis Patient Reported
September 20, 2018September 20, 2018
A new case report describes a patient with arthritis of the sternoclavicular joint (SC joint, ...

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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