Inherited metabolic disorders (IMDs) is an umbrella term including more than 1400 diseases, most of which are extremely rare. Although the incidence of a single IMD is low (1:1.000.000 to 1:110.000 people) – the global incidence of all the diseases taken together range from 1:2500 to 1:800 people.
MetabERN is a European network of healthcare providers and patient organisations dedicated to rare metabolic diseases. To learn more about MetabERN, its aims, and activities, visit HERE.
In this leaflet, you can also find a simple, compact and plain language summary of MetabERN’s mission, available valences and resources created to access YOUR issues and needs.
Download the leaflet HERE.
Living with an IMD often entails facing many healthcare, social, psychological and educational challenges (https://www.readcube.com/articles/10.1186/s13023-021-01948-5). Finding centralised, trustworthy, and understandable disease-specific information can be difficult for people living with IMDs.
The links below will help you in this quest. These are resources where you can look for trusted information and find suggestions on how to seek support.
Information for patients and families: