Forums and discussion lists offered by EURORDIS on www.rareconnect.org are open to patients, health professionals, families, and loved ones affected by these diseases.
Registration is required to participate in forum exchanges. Reading the messages may, however, depend on the option selected by the authors of posts and be restricted to members of the community or be free for all audiences. Forums are moderated discussion lists and messages are posted immediately, moderators then ensure that they comply with the Charter.
The authors of the messages are solely responsible for the information they disseminate.
All members must comply with the laws of his/her own country, particularly in avoiding the spread of illegal content (defamation, insults, incitement to suicide ...), respecting the privacy of members and other health professionals, and copyright and image rights laws in their country.
It is recommended that any new member be polite in initial exchanges and keep a measured tone in all exchanges. Registering under various pseudonyms in order to post many messages is not allowed.
It is imperative to:
Respect for others is also reflected in the honesty to them: In particular, health professionals must indicate their status when they distribute medical information.
Any message on the forum is for information purposes only, and may in no circumstances be regarded as medical advice.
Any information relating to a therapy or diagnosis, even if it comes from patients 'experts' of their disease, must be received with caution. Only a physician is authorized to confirm its validity. It must not, under any circumstances, delay or replace the advice of the treating physician.
The information posted by patients is often partial, and only cover one aspect of their illness. Their history is not always clear. The rule is to avoid generalizing from personal experience. Members should indicate that this information is about his/her own case. Members should not offer diagnoses to other members.
Treatments should be provided individually by a doctor, and depend on each particular case. The treatment choices of other patients must be respected and a member should never claim that a specific treatment is the only one to be effective for a disease, although it may be true for one individual.
It is advisable to be careful when we express ourselves on products that have not been evaluated for the disease concerned by this online community. It is especially dangerous to the promotion of dubious products to have supposedly miraculous virtues.
Any form of advertising is not allowed in the messages, not only for treatment but also for clinical trials, registries, doctors, or care facilities.
In the messages, only links to personal pages or pages that provide real information may be allowed provided they are relevant, and do not constitute a form of disguised advertising. Any proposal for services is prohibited.
Before posting a message, every member should be aware that posting might share possibly confidential information to be linked to personal identifiers (the user name and profile information a member chooses to provide).
This information will be brought to the attention of tens or even hundreds of people; no one knows the identity or the motivation of those accessing the information. Posted messages can also be found by a simple search engine.
It is therefore important to be careful when disseminating personal information (name, phone, ...) or when they concern the privacy of relatives, especially children.
In addition, every member should be aware that some of their own posts can be included in the responses of other participants, and can, therefore, never be removed from the archives of this online community.
It is advisable to weigh the potential benefits of participation in this online community with attendant risks to the confidentiality of information.
Moderators are responsible, in particular, to ensure the discipline of online communities. We should respect their decisions, not question their motives, and avoid blaming them for the behavior of other members.
It is especially necessary to comply with a moderator decision to end a discussion when the exchanges no longer advance the debate.
To facilitate identification of the subject of a message, the subject field must be filled with as much precision as possible. It is also the subject that identifies the message language.
It is advisable to treat a subject per message and change the subject line when a new topic is addressed.
The messages should be, wherever possible, in short, clear, and not contain "SMS language" that is not understood by everyone.
Moderators can delete any message that does not comply with the operating rules defined in this Charter. Other reasons for deleting a post from certain members or excluding certain members from the site may exist beyond what is mentioned in this Charter. The deleting of messages and the exclusion of members remains at the sole discretion of the moderators. Before any exclusion of a member, the moderators will send a notification warning.
EURORDIS, responsible for this website may, in accordance with their legal obligations, "act quickly to remove data or make access impossible" when they have knowledge from a third person that another member has circulated illegal content in its forums.
EURORDIS values the volunteer moderators time and includes time spent by moderators in the overall volunteer activities of EURORDIS.
This publication (or activity) has been funded with support from the European Union's Health Programme. This material only reflects the views of the author, and funders cannot be held responsible for any use which may be made of the information contained herein.