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July 18, 2019

European Initiative Targets Diagnosis, Treatment of Rare Diseases

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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 16, 2019

Some Sjögren’s Patients at Higher Risk for Parkinson’s, Study Finds

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People with Sjögren’s syndrome — particularly women, younger patients and those receiving certain immunosuppressant therapies — are at higher risk of developing Parkinson’s disease, according to a new study. ... Read more

July 9, 2019

Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients

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The challenges Vesna Aleksovska faced when she decided a decade ago to help fellow Macedonians with rare diseases were so daunting, they would have scared off all but the ... Read more

July 9, 2019

Mouse Study Suggests Benefits of Diabetes Drug in Sjögren’s Syndrome

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A new study in mice suggests that metformin — a drug typically used to control blood sugar levels in diabetes — may be able to reduce inflammation and damage ... Read more

July 5, 2019July 4, 2019

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

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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

July 2, 2019

Higher Regulatory B-cell Levels Linked to Lower Disease Activity in Primary Sjögren’s Syndrome, Study Says

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Immune regulatory B-cells (Bregs) are less abundant in patients with primary Sjögren’s syndrome, and are inversely correlated with disease activity, a study suggests. Therefore, low blood Bregs may help ... Read more

June 26, 2019June 25, 2019

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

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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 25, 2019

Pain, Depression, and Daytime Sleepiness Linked to Physical, Mental Fatigue in Sjögren’s

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Pain, depression, and daytime sleepiness are significantly associated with both mental and physical fatigue in patients with primary Sjögren’s syndrome, even after adjusting for comorbidities and medication, a new ... Read more

June 20, 2019

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

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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 18, 2019June 17, 2019

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

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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

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