News

August 20, 2019August 20, 2019

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

News

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

News

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

News

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

August 5, 2019August 5, 2019

Jakafi Shows Promise for Treatment of Cutaneous Sarcoidosis, Report Says

News

Using Jakafi (ruxolitinib) to treat a woman with polycythemia vera (PV; a blood cancer) led to complete resolution of her cutaneous sarcoidosis, and to mild reduction of her lung nodules, ... Read more

August 2, 2019August 2, 2019

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

News

Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage ... Read more

August 1, 2019

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

News

Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state ... Read more

July 29, 2019July 29, 2019

Rare Case of Spinal Sarcoidosis Provides Guidelines for Diagnosis, Management

News

A new report describes a woman with a very rare case of sarcoidosis involving only the spine who entered full remission after surgical removal of the lesion followed by ... Read more

July 22, 2019July 22, 2019

Older Sarcoidosis Patients Have Worse Disease, Outcomes, Study Suggests

News

According to a new study comparing older and younger sarcoidosis patients, elderly people with sarcoidosis tend to have more severe disease and worse clinical outcomes. The study, “Elderly sarcoidosis: ... Read more

July 18, 2019July 18, 2019

European Initiative Targets Diagnosis, Treatment of Rare Diseases

News

A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while also accelerating the development of ... Read more

July 15, 2019July 15, 2019

Blood Cell Count Abnormalities Might Indicate Bone Marrow Involvement in Sarcoidosis, Report Suggests

News

Alterations in the blood cell count of people with sarcoidosis might indicate that the disease has invaded the bone marrow, a case report suggests. Doctors should therefore consider this ... Read more

Pin It on Pinterest