News for Patients

Last week, the High-Level Meeting on a European Innovation and Care Ecosystem for Rare Diseases (HLM Rare 2025) hosted in

The Spanish Association of GSD Patients (AEEG), member of our board of patient organisations, has recently organised the 16th International

What happens when your body is under siege, but the world can’t see the battle?Living with Mitochondrial Encephalomyopathy with Lactic

In 2024 and 2025 the European Commission has funded a series of national workshops to raise awareness on patients’ rights

September shines a light on Mitochondrial Disease Awareness and Pain Awareness Month. Mitochondrial diseases impact around 1 in 5,000 individuals

Elevated ammonia levels in the blood may result from various inborn errors of metabolism and can cause neurological impairment or

The CTX International Workshop Series will be held on Monday, September 1 in Kyoto, Japan as a satellite meeting, prior to

As we wrap up Fabry Disease Awareness Month, the Antwerp University Hospital UZA, in collaboration with MetabERN, is excited to

Join the Rare Neurotransmitter Diseases (RND) Researchers Forum which will take place on May 16, 2025, in Zagreb, Croatia, under

On 28 February 2025, the newly established Committee on Public Health (SANT) of the European Parliament launched an important public

Register for the Online Webinar “Think Ammonia” hosted by the Greek patient organisation Krikos Zois in collaboration with Metabolic Support

On February 11, the Parliament Hall of Udine Castle hosted an event for Rare Diseases Day, organized by UNIAMO Federazione