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 health care 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 to only registered users.
The content of the messages is solely the responsibility of the registered user 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 any message that is perceived to violate the rules and to expel the user if the rules are repeatedly violated. Before any exclusion of a user, the moderator will send a notification warning.
Compliance with laws and regulations
All users 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 users and health care 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 users. 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 as a strictly personal view, and in no circumstances should be perceived as 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 your condition is unique and these experiences are individual to every patient. It should be noted and indicated that the experiences and stories shared in this forum are solely individual and descriptive of the user’s own case. No diagnoses should be offered in the discussions and personal experiences should not be generalized.
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 for a specific product or category of products in this forum.
No form of advertisement
No form of advertisement is allowed in this forum. 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.
Privacy
Before posting a message, users 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 users 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.
Discipline
Moderators of the discussion space have a role in 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, including when a decision is made to close a particular discussion that is no longer advancing.
Writing messages
To facilitate and channel discussions, it is advisable to clearly identify the subject in the subject line of a new discussion thread. When responding to a message it is advisable to use the same subject line.
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 users of this discussion space.
