Purpose, function and management of online patient support services
Iron Disorders Institute provides online patient support services. One of the most popular is the 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 the venue.
JOIN THE ONLINE EMAIL DISCUSSION GROUP
Getting On and OFF the Excess Iron Discussion list
Iron Disorders Institute (IDI) uses a confirmed opt-in subscription process to guarantee that you want to subscribe. Check your email for additional steps needed to respond to the confirmation notice and how to post messages. You will not be able to post messages to the List until you have completed these steps.
Open your email as if you are getting ready to send someone a message.
In the “To” space copy and paste the following ExcessIronfirstname.lastname@example.org
Then hit “Send”
In a few moments, an email will come to your “in box” from the List Administrator. When it arrives Hit reply. This tells the administrator that you have “opted-in”
You will be on the List and the email email@example.com will become a “contact” on your computer
When you wish to post something use this “contact”
The same works for getting OFF the list
Copy and paste: ExcessIronfirstname.lastname@example.org
HEMOCHROMATOSIS:A FAMILY’S STORY
Explore Christine O’Leary’s father’s story with Hemochromatosis.