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 help lines offer social, psychological and information solutions to all of these needs.

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

A * in the list below indicates the help line is a Member of the European Network of Rare Disease Help Lines.

EURORDIS promotes, networks, trains and advocates on behalf of rare disease help lines. In order to create a service that provides quality information and support, patient organisations need guidance and assistance. The European Network of Rare Diseases Help Lines provides this guidance.