Purpose, function and management of these online services.
Iron Disorders Institute provides two online patient services, both have a different purpose and function.
Excess Iron Discussion List
The List provides a modestly censored* open venue through which patients can share experiences with other patients although, sometimes healthcare professionals participate. The List is "strictly opinion" and support. The benefit of this openness allows us to learn what is important to people while its members get to know one another and appreciate that they are not alone--there is a high degree of camaraderie and community spirit on the List, which can be encouraging to someone who is reaching out.
*we do not block individuals for their opinion so long as it is iron related. When content is not iron related, it is reviewed by individuals at Iron Disorders Institute who determine if the content does not suit the purpose and guidelines of these venue
The Forum
The forum is different kind of venue; it does not replace the Excess Iron Discussion List, but augments it. It is a venue where members of chat groups or online discussion, email, etc can obtain an expert opinion (versus lay opinion) to a question. The responses posted in the Forum are based on expertise such as advice from our Medical & Scientific Advisory Board and clinical evidence (research findings).
Where the List content (exchange) is SUBjective and allows for people's personalities to emerge, the Forum content is more OBjective, providing an expert or evidence-based position when disagreement arises on the List. We encourage members to use both venues.
If you have questions or problems with these services please contact Stephanie Clary: sclary@irondisorders.org
Link to the forum
http://forum.irondisorders.org/
To Get Off The List