New User Guide

Are you a new user?
Don’t worry we will guide you.

How to Create An Account?

Click the image to watch the video on creating a new account.


Basic User Instructions for Ben’s Friends
New Community Layout
Reminders for members:

  • If you get lost, just go back to the Home Page.
  • You can’t break it. Be brave!
  • These are just the basics: you will discover lots more!
  • Your Moderator and ModSupport are there to help you. Just ask.
  • Our communities are open to read by anyone on the internet. That’s why you should post using a screen name. Do not post your real name, email address or phone number! Here, you are as anonymous as you decide to be.
  • Get to know your fellow members by reading their profiles. Profiles can be seen only by logged in members.
  • Our communities are monitored and moderated by volunteers who are rare disease patients themselves. They are committed to keeping things safe and supportive for everyone.
  • Our Moderators are the best on the internet, but our communities also use cutting-edge security software for an extra layer of safety.

You already have your own private coach!

Did you know that you already have your own private coach? Click on your avatar (upper right) and scroll down the messages until you come to the first one you received. Its subject line looks like this:


That message is actually the first move in an email game you can play with your new friend, Discobot. She will teach you how to do things and tell you that you are very clever. Go on: give it a go!

Look for the printable version of this information, coming soon!

Return to the home page from any page on the site:

How do I start my own discussion thread?

How do I edit (change) or delete a post I’ve made?

How can I let another member know about a thread they’re not on?

How can I see another member’s profile?

How do I send a private message to someone?

How do I send a private message to a Moderator?

Is this a public post or a private message? I can’t tell.

How do I upload a picture into my post?

Now I want to log out!

How do I check my account or change my personal information?

1 Like

Can I change my user name?

Yes, Faith_s_Mom. You can. Here’s how:-
On the top right of this page you will see your avatar, the peace dove in a blue circle.
If you click it a dropdown menu will appear.
Just below your avatar, on the top line of the dropdown menu is a silhouette of a person, labelled ‘Preferences’, if you click it another menu appears with Summary, Activity, Invites, Drafts, Preferences and Log out. Click on ‘Preferences’. This will bring up your profile page.
On the left of your profile page is a list Account, Profile, Emails etc. Click on account.
This will bring up your USERNAME, PROFILE PICTURE etc etc
Just under the title USERNAME you will see your name with a small circle with a pencil.
Click on the Pencil and a ‘Change Username’ text box will appear.
Click in the textbox and type your new username. Once the changes have been made do not forget to click the blue ‘Change’ button for those changes to take effect.

Hope it helps and please do let us know if you have any issues making the changes.

Merl from the Moderator Support Team