Charter for Online Patient Communities

This Charter proposes the general principles that regulate patients’ and caregivers’ interactions in online communities. It determines the limits of the roles of various participants implicated in online community interactions and specifies the correct rules of community life for these types of exchanges.

The objectives of online communities are: to provide information, to help patients in the everyday
management of their disease, to provide support for patients and those close to them, to break their
isolation, to share experiences, to gather patient generated knowledge on living with the disease and
possibly to support the intervention of patients in the public domain (media, scientific and medical
circles, public organisations).

Emerging platforms for online collaboration are fundamentally changing the way patients manage
their disease. Online communities offer new ways to engage with other patients, caregivers,
healthcare professionals, patient support groups and industry. It’s a new model for interaction that can
help build stronger, more successful relationships and offer patients quality information on their

This document can be used as it stands by any association, and any person in charge of, or
managing, an online community. It can also be used by any person who wishes to create an online
community specifically for patients and or caregivers.

These rules can also be redefined to take into account the specificities of each community, or be
adapted according to national customs.

Each member receives these rules upon registration on the online community website; the various
participants can therefore refer to them in the event of conflict.

Download the Charter for Online Communities.

Visit the Terms and Conditions section on RareConnect.

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