Terms and Conditions
This is a closed discussion space offered by the EHC and is open to people with haemophilia who have inhibitors, their families and caregivers, and healthcare professionals.
Registration is required to participate in the discussions. Reading the messages is possible without registration, unless the author of the message has restricted the post only to registered users.
The content of the messages is solely the responsibility of the member posting the respective message. By checking the box under this text and clicking on “register”, you express your unconditional agreement to the following rules. The moderator of the forum reserves the right to remove the message if the rules are violated and to expel the member if the rules are repeatedly violated. Before any exclusion of a member, the moderator will send a notification warning.
Compliance with laws and regulations
All members must comply with the laws of their own country, particularly in avoiding the spread of illegal content (defamation, insults, incitement to suicide…), respecting the privacy of other members and healthcare professionals, and copyright and image rights laws in their country.
Respect for others
It is only allowed to register under one pseudonym to post in this discussion space.
It is imperative to respect the opinions, beliefs, and differences of other members. It is forbidden to spread false or unverified information that might harm or endanger other users.
For information purposes only
This discussion space is designed for exchanging experiences, sharing views and building the community of people with haemophilia who have inhibitors, their family members and caregivers.
Any message in this discussion space must be treated as informative and a personal view, and in no circumstances should be perceived as a medical advice. Only healthcare professionals are entitled to share general and non-personal medical advice. Any message containing suggestions in the form of personal medical advice should in no circumstances replace the advice of the treating doctor.
No diagnostic conversations
Experience of their condition is unique and individual to every patient. It should be noted and indicated that the experiences and stories shared are solely individual and descriptive of the member’s own case. The rule is to avoid generalizing from personal experiences shared. No diagnoses should be offered in the discussions.
No treatment recommendation
Treatment is strictly an individual domain and is provided by the treating doctor only. The treatment choices of other patients must be respected and special care should be paid when discussing specific treatment products due to several reasons, e.g. accessibility to treatment and treatment product variability between European countries; the treatment is individual and should be supervised by the treating doctor; no preference should be indicated to a specific product or category of products.
No form of advertisement
No form of advertisement is allowed in the public messages. This applies not only to treatment, but also to clinical trials, registries, doctors, or any type of care facilities. Any proposal for services is forbidden.
Before posting a message the members should be aware of privacy issues related to this post, such as sharing confidential information about oneself and others or sharing personal identifiers that can be abused. It is advisable to be careful when sharing personal information (name, phone etc.) or when messages concern the privacy of relatives, especially children.
The members of the discussion space should be aware that the messages posted will remain in the archives of the discussion space and can be potentially found through an external search engine.
Moderators of the discussion space have a role of maintaining and diversifying the discussions, as well as maintaining the discipline and compliance with the rules. The decisions of the moderators should be respected and complied with, especially when a decision is made to close a particular discussion that is not longer advancing.
To facilitate and channel the discussions, it is advisable to identify the subject line clearly when starting a new discussion thread. When responding to a message it is advisable to comply with the subject line.
The messages should be short and clear, avoiding slang and abbreviations that might not be understood by everyone. It should be taken into account that English most likely will not be the first language for most of the members of this discussion space.