More Space in User Profiles

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As a forum member you are welcome to fill in a User Profile to tell other forum members a little bit about yourself. This forum feature lets you and other patients and family members get to know each other. The information is optional; you can decide how little or how much to share.

What's in a User Profile

You can fill in any or all of these User Profile fields:
Birthday: share it or keep it private
Home Page URL: your personal webpage, if you have one
Instant Messaging names: your AIM, MSN, or other IM name
User Type: patient, family member, spouse, caregiver, other
Disease: AA and/or MDS and/or PNH and/or other
Location: city, state, or country where you live
Occupation: what you do or what you did before retiring
Biography: anything else you'd like to tell us about yourself

What's new

The Biography field previously held up to 250 characters. Some forum members tried to put more than a couple of sentences in their biography and ended up with truncated information.

To make that less likely to happen, we have doubled the size of the Biography field, so the text can now be up to 500 characters. If you have more to share than that, we suggest that you start a thread in the Tell Your Story forum.

Displaying and editing User Profiles

People see your User Profile when they click on your user name. To see another user's profile, click on their user name. To see your own user profile as others see it, click on your user name next to a forum post or use the My Profile shortcut in the Quick Links menu at the top of any forum page.

To edit your User Profile, click here.

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Your Forum Signature is a line or two that will appear automatically under each of your forum posts. You can use it to list the basic facts about you and the patient. Example:
Jane, mother of John age 12; diagnosed AA 2008; treated with ATG in 2009; currently on cyclosporine.

A signature like this is convenient for other forum members because it gives them the basic facts when they read your forum posts. You won't have to keep repeating that information when you exchange messages with somebody new.

If you update your Forum Signature, the new version will appear under all of your forum posts, even posts you've made in the past.

To edit your Forum Signature, click here.


Your Profile Picture is a small photo of you that you upload. It will appear on your User Profile page and in the Members List.

To upload a Profile Picture, click here.


All forum members are welcome to start a thread about themselves in the Tell Your Story forum, and to comment on the stories posted by other forum members.

To start a thread about yourself, go to the Tell Your Story forum and click the New Thread button.