News

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

July 8, 2019July 8, 2019

Workplace Hazards Account for 30% of Sarcoidosis Cases, Study Suggests

News

Work-related hazards account for nearly 1 in 3 cases of sarcoidosis, and for at least 1 in 10 cases of other respiratory diseases, including asthma, chronic obstructive pulmonary disease ... Read more

July 4, 2019July 4, 2019

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

News

It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although ... Read more

June 26, 2019June 25, 2019

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

News

A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials ... Read more

June 24, 2019June 24, 2019

Physical Activity Monitors Can Help Better Define Sarcoidosis’ Severity

News

People with sarcoidosis have a higher degree of physical inactivity compared with healthy individuals, a pilot study led by researchers from the King’s College London shows. Physical activity monitors, ... Read more

June 20, 2019June 20, 2019

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

News

Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, ... Read more

June 17, 2019June 17, 2019

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy

News

People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most ... Read more

June 3, 2019June 3, 2019

Pulmonary Hypertension Therapies May Help Heart Conditions in Certain Sarcoidosis Patients, Study Suggests

News

While there no therapies approved for sarcoidosis-associated pulmonary hypertension (SAPH), pulmonary hypertension-specific therapies may help ease right heart dysfunction in a select group of patients, according to results of ... Read more

May 27, 2019May 27, 2019

Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries

News

RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site ... Read more

Pin It on Pinterest