On the occasion of European Rare Disease Day on February 28, 2009, the Federation for Orphan Diseases (FMO) is strengthening its support system for patients with the online publication of the guide Orphan Diseases Info Tips, its new tool for information, access to rights and care for the 4 million people in France suffering from an orphan disease.
the result of collective work carried out with FMO associations and professionals in the fields covered, “Diseases Orphelines Infos Advice” offers keys to entering the maze of administrative procedures related to the management of illness or disability , as well as responses to the various situations that patients and their families may face.
Health, education, care, access to rights, transport, housing, money and taxation, all topics covered by the guide, the content of which will be updated over time depending in particular on changes in legislation.
Finally, to break the isolation in which many families or patients find themselves, the federation for orphan diseases has also set up thematic forums on the Internet, intended to help those concerned find advice or simply a space for dialogue. .
