Googling for neurological disorders: from seeking health-related information to patient empowerment, advocacy and open self-disclosure in the Neurology 2.0 era

The Internet, since its introduction, has played a major role in re-shaping the patient-physician communication and interaction, fostering a shift from a paternalistic to a patient-centered model. Because of its dynamic nature, the Internet has been used a platform not only for disseminating knowledge, facilitated by an improved access to an increasing figure of available resources, but also to spread advocacy, awareness, funding raising and even to openly self-disclosure one's own disease, breaking and removing any taboo. The era of Medicine 2.0, as stated by Eysenbach, is characterized by openness, collaboration, participation and social networking. The situation is completely different with respect to time when Odone's parents, after the diagnosis of adrenoleucodystrophy of their son, decided to attend the medical school in order to collect information about a devastating, unheard disease and had to fight against the medical establishment to convince of the effectiveness of their discovered therapeutics. Orphan and rare neurological diseases find nowadays their space and dignity online. However, not to dissipate Odone's family legacy and their "complicated lessons" (Lerner), some issues should be carefully addressed by health authorities, such as the reputability, reliability and accuracy of the online available material, avoiding to spread material that could instill in patients illusions and unjustified hopes. Neurologists should be aware of this, participating in online activities, and recommending high quality, selected sites to their patients