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233 public initiatives (out of 317 initiatives in total)

Rare inherited metabolic diseases (IMDs), of which there are more than 700, are individually rare but collectively frequent. Many metabolic diseases have severe, sometimes life-threatening, implications for patients. The...

RITA brings together the leading European centres with expertise in diagnosis and treatment of rare immunological disorders. These constitute potentially life-threatening conditions requiring multidisciplinary care using...

ERNICA addresses congenital malformations and diseases that appear early in life and require multidisciplinary care and long-term follow-up, and examines the transition to adulthood. The network is organised around tw...

Rare and complex kidney diseases comprise a wide range of congenital, hereditary and acquired disorders. It is estimated that at least 2 million Europeans are affected by rare kidney diseases, with glomerulopathies and c...

Rare multisystemic vascular diseases include disorders which affect all types of blood vessels, with consequences for several bodily systems. These diseases require a multidisciplinary approach to care. VASCERN compri...

The European Reference Network on Rare Neurological Diseases (ERN-RND) aims to address the unmet needs of more than 500 000 people living with RNDs in Europe. Due to significant phenotype and genotype heterogeneity of RN...

Neuromuscular diseases (NMDs) occur from early childhood to late adulthood and are characterised by muscle weakness and wasting, but may be associated with other symptoms, including fatigue, pain, numbness, blindness, sw...

Paediatric cancer is rare and comes in multiple subtypes. With 20 000 children newly diagnosed with cancer across Europe and 6 000 paediatric cancer patients dying each year, it remains the leading cause of death from di...

Complex lung diseases require multidisciplinary care along with psycho-social support. This complexity can be due to the underlying genetic mechanism of the disease, the secondary changes and damage done to other organ s...