European Initiative Targets Diagnosis, Treatment of Rare Diseases
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 ... Read more
Updates
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Some Sjögren’s Patients at Higher Risk for Parkinson’s, Study Finds
People with Sjögren’s syndrome — particularly women, younger patients and those receiving certain immunosuppressant therapies — are at higher risk of developing Parkinson’s disease, ... Read more -
Macedonian Gaucher Activist Publicizes Plight of Rare Disease Patients
The challenges Vesna Aleksovska faced when she decided a decade ago to help fellow Macedonians with rare diseases were so daunting, they would have ... Read more -
Mouse Study Suggests Benefits of Diabetes Drug in Sjögren’s Syndrome
A new study in mice suggests that metformin — a drug typically used to control blood sugar levels in diabetes — may be able ... Read more -
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
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 ... Read more
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Higher Regulatory B-cell Levels Linked to Lower Disease Activity in Primary Sjögren’s Syndrome, Study Says
Immune regulatory B-cells (Bregs) are less abundant in patients with primary Sjögren’s syndrome, and ... -
NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy ... -
Pain, Depression, and Daytime Sleepiness Linked to Physical, Mental Fatigue in Sjögren’s
Pain, depression, and daytime sleepiness are significantly associated with both mental and physical fatigue ... -
Eurordis Unveils Integrated-care Initiative for Rare Disease Patients
Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to ... -
History of Infections Boosts Risk of Developing Primary Sjögren’s Syndrome, Study Suggests
Having a history of infections, particularly respiratory, skin, and urogenital infections, increases the risk ...
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Researchers Find Specific Autoantibody Linked to Peripheral Nerve Damage in Sjögren’s Syndrome
News
Researchers recently identified an autoantibody — an antibody produced against a person’s own tissue or molecule — significantly associated with the peripheral nerve damage common in Sjögren’s syndrome patients. This finding may help scientists understand the cause and development of ... Read more