Orphanet provides a directory of centres of expertise in Europe, including those participating in European Reference Networks for rare diseases, for those looking for information on where to seek expert advice or treatment in neighbouring countries. The directory can be searched by disease name, by country and can be filtered by type of management or if the centre treats adults or children.
Orphanet provides a directory of patient organisations in Europe, as well as alliances/federations of patient organisations in Europe. These can be searched by disease name and by country.
Orphanet also provides a list of rare disease helplines by country.
Patients can also find Emergency Guidelines for their disease that can be highly valuable in emergency situations via the disease's information page or through this list: