Eurordis - Rare Disease Europe

People living with a rare disease are frequently faced with a critical lack of information and support. Upon hearing their diagnosis, their first point of contact is often the local patient organisation for their diseases. If a patient organisation does not exist in their area or cannot supply the correct, validated information, the patient is left feeling isolated.

Rare disease helplines offer social, psychological and information solutions to all of these needs.

EURORDIS promotes, networks, trains and advocates on behalf of rare disease helplines. In order to create a service that provides quality information and support, patient organisations need guidance and assistance. The European Network of Rare Diseases (ENRD) Helplines provides this guidance.

Contact the helpline in your country listed below to find out more information about therapeutic recreation, respite care and adapted housing.

If a helpline for your country is not provided, please reach out to a patient organisation in your country for assistance.

List of ENRD helplines