Patient-based Registry

A collaborative project to tackle neurodevelopmental RASopathies

RASopathies are a group of genetic diseases that cause a wide range of symptoms, ranging from heart defects to varying degrees of neurological and neurocognitive impairment. While multidisciplinary symptomatic treatments are available for the physical manifestations of the diseases, there is a lack of therapies targeting specifically the neurocognitive symptoms.

EURAS bridges this scientific gap. 16 partners from 8 countries join forces to achieve one shared goal: to develop new effective therapies, including cutting-edge technologies for improved drug-delivery, and to ensure operative disease management for neurodevelopmental RASopathies.

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start date 01 June 2023
Duration 48 month
Budget € 8.5 Mil.
16 partners 8 countries

A joint effort between patients and researchers

Patients’ perspectives are at the core of EURAS. The project was initiated by committed parents whose children live with RASopathies. Now, EURAS brings together 1,200 families affected by neurodevelopmental RASopathies, hereby establishing a transnational network for support, exchange and awareness-raising.

Patient Organisations are key partners within the EURAS network. They support the set-up of a PATient registry of RASopathies PATRAS. This is a unique opportunity for clinicians, bioinformaticians and researchers to access data from large patient cohorts. It will allow to generate new disease models to uncover disease mechanisms and develop innovative methods for drug delivery to the brain.

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