June 19, 2018June 19, 2018
Case Report Describes Rare Coexistence of Sarcoidosis and Tuberculosis in Patient with Severe PAH

A new case report from India describes the occurrence of both sarcoidosis and tuberculosis (TB) in a patient with ... Read more
June 14, 2018June 14, 2018
Foundation for Sarcoidosis Research Launches Patient Ambassador Program

The Foundation for Sarcoidosis Research recently launched a Patient Ambassador Program called “Ask the Ambassadors!” to help people with sarcoidosis ... Read more
June 7, 2018June 7, 2018
US ‘Right to Try’ Law Meets with Mix of Praise and Criticism, Including Among Those with Rare Diseases

As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan ... Read more
May 29, 2018May 29, 2018
Endocan Levels Can Predict Cardiovascular Involvement in Patients with Sarcoidosis

Levels of endocan, an indicator of inflammation, can be used as a predictive biomarker for the involvement of the ... Read more
May 29, 2018May 29, 2018
#ERDC2018 – When Treating Rare Disease Patients, Don’t Overlook Quality of Life, Panel Urges

Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — ... Read more
May 22, 2018May 22, 2018
Single Mindfulness Training Session Shows Benefits for Sarcoidosis Patients

Mindfulness exercises can help decrease the physical and psychological symptoms of sarcoidosis and improve well-being and motivation in patients ... Read more
May 17, 2018May 17, 2018
‘Rare Impact Awards’ Dinner Marks Orphan Drug Act and NORD at 35

The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act ... Read more
May 16, 2018May 16, 2018
#ECRD2018 – EU Must Do More for Rare Disease Patients, Eurordis Leaders Say

The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live ... Read more
May 15, 2018May 15, 2018
Newly Established Registry Sheds Light on Treatment, Features of Sarcoidosis-linked PH

A newly established registry for patients with sarcoidosis associated with pulmonary hypertension sheds light on characteristics and treatment patterns ... Read more
May 10, 2018May 10, 2018
Younger Sarcoidosis Patients Given Double Lung Transplants Show Better Survival Rates, Study Finds

Sarcoidosis patients given double lung transplants, especially at younger ages, show superior survival rates to those with other serious ... Read more
May 8, 2018May 8, 2018
High Blood Calcium Levels, Scarring on Scalp, Kidney Failure Rare in Sarcoidosis Cases, Report Says

In rare cases of sarcoidosis, patients may have high blood calcium levels (hypercalcemia), scarring on the scalp, and kidney failure, ... Read more
May 3, 2018May 3, 2018
High Antibody Levels in Sarcoidosis Aren’t Good Predictors of Disease Severity, Study Finds

A small study assessing antibody levels in sarcoidosis patients at the time of their diagnosis found that elevated levels did not ... Read more

June 19, 2018June 19, 2018

Case Report Describes Rare Coexistence of Sarcoidosis and Tuberculosis in Patient with Severe PAH

A new case report from India describes the occurrence of both sarcoidosis and tuberculosis (TB) in a patient with severe pulmonary arterial hypertension (PAH), and highlights the importance of early ... Read more

June 14, 2018June 14, 2018

Foundation for Sarcoidosis Research Launches Patient Ambassador Program

The Foundation for Sarcoidosis Research recently launched a Patient Ambassador Program called “Ask the Ambassadors!” to help people with sarcoidosis clarify questions they may have about life with the condition, ... Read more

June 7, 2018June 7, 2018

US ‘Right to Try’ Law Meets with Mix of Praise and Criticism, Including Among Those with Rare Diseases

As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn of Indianapolis tried twice to embrace him. The third ... Read more

May 29, 2018May 29, 2018

Endocan Levels Can Predict Cardiovascular Involvement in Patients with Sarcoidosis

Levels of endocan, an indicator of inflammation, can be used as a predictive biomarker for the involvement of the cardiovascular system and the development of atherosclerosis in patients with ... Read more

May 29, 2018May 29, 2018

#ERDC2018 – When Treating Rare Disease Patients, Don’t Overlook Quality of Life, Panel Urges

Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different ... Read more

May 22, 2018May 22, 2018

Single Mindfulness Training Session Shows Benefits for Sarcoidosis Patients

Mindfulness exercises can help decrease the physical and psychological symptoms of sarcoidosis and improve well-being and motivation in patients and caregivers, a small study found. Sarcoidosis patients, including some ... Read more

May 17, 2018May 17, 2018

‘Rare Impact Awards’ Dinner Marks Orphan Drug Act and NORD at 35

The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and NORD’s founding at a dinner tonight in Washington, D.C. ... Read more

May 16, 2018May 16, 2018

#ECRD2018 – EU Must Do More for Rare Disease Patients, Eurordis Leaders Say

The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in its 28 member countries, officials meeting last week in ... Read more

May 15, 2018May 15, 2018

Newly Established Registry Sheds Light on Treatment, Features of Sarcoidosis-linked PH

A newly established registry for patients with sarcoidosis associated with pulmonary hypertension sheds light on characteristics and treatment patterns that can be used for future randomized clinical trials, according ... Read more

May 10, 2018May 10, 2018

Younger Sarcoidosis Patients Given Double Lung Transplants Show Better Survival Rates, Study Finds

Sarcoidosis patients given double lung transplants, especially at younger ages, show superior survival rates to those with other serious lung diseases, researchers report, suggesting these considerations guide the procedure. ... Read more

May 8, 2018May 8, 2018

High Blood Calcium Levels, Scarring on Scalp, Kidney Failure Rare in Sarcoidosis Cases, Report Says

In rare cases of sarcoidosis, patients may have high blood calcium levels (hypercalcemia), scarring on the scalp, and kidney failure, according to a new report. The case report, titled “Symptomatic ... Read more

May 3, 2018May 3, 2018

High Antibody Levels in Sarcoidosis Aren’t Good Predictors of Disease Severity, Study Finds

A small study assessing antibody levels in sarcoidosis patients at the time of their diagnosis found that elevated levels did not predict a more severe disease progression. But French researchers found ... Read more