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October 7, 2019October 7, 2019

Mycophenolate Mofetil May Be Effective as Alternative Sarcoidosis Treatment, Small Study Suggests

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Mycophenolate mofetil (MMF) significantly reduced disease symptoms in people with sarcoidosis, and helped to reduce their daily dose of corticosteroids, a small study suggests. The study, “Mycophenolate mofetil as an alternative treatment ... Read more

September 30, 2019September 30, 2019

LAS System May Fail to Identify Sarcoidosis Patients at Urgent Need of Lung Transplant, Study Finds

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The current scoring system used to assess the urgency of lung transplants, called LAS (lung allocation score), fails to predict the risk of death in people with sarcoidosis, a ... Read more

September 27, 2019September 27, 2019

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

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Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board ... Read more

September 23, 2019September 23, 2019

Nonspecific Symptoms Lead to Lower Quality of Life for Patients, Partners, Study Shows

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Sarcoidosis patients and their partners experience a lower quality of life because of nonspecific disease-associated symptoms compared to healthy people, a new study demonstrated. The study, titled “Quality of ... Read more

September 2, 2019August 30, 2019

‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

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Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. Two entries in November’s “Disorder: ... Read more

August 29, 2019August 28, 2019

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

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Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such ... Read more

August 26, 2019August 26, 2019

Adalimumab May Safely Treat Sarcoidosis in Hepatitis C, Case Report Suggests

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People with hepatitis C who develop sarcoidosis may be safely treated with adalimumab, marketed by Abbvie as Humira, a case report suggests. The case was described in a study, “Sarcoidosis with ... Read more

August 20, 2019August 20, 2019

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

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Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people ... Read more

August 19, 2019August 19, 2019

Sarcoidosis Educational Event Set for Saturday at University of Cincinnati

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An educational conference for people with sarcoidosis and those close to them will be held at the University of Cincinnati this Saturday, featuring doctors with expertise in this disease, presentations, and ... Read more

August 12, 2019August 12, 2019

Analysis Highlights Importance of Risk Assessment in Cardiac Sarcoidosis

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A new statistical analysis of Finland’s nationwide cardiac sarcoidosis (CS) registry found that sudden cardiac death plays a significant role in the outcome of CS patients, affirming the importance ... Read more

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