Frequently Asked Questions (FAQ)

This page is designed to answer some of the frequently asked questions to our community. 
 

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FREQUENTLY ASKED QUESTIONS

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SIGN UP/ SIGN IN ISSUE

How do I verify my email address?

What if I registered an email that is invalid or has a typo?

How can I reset my password?

How do I enter a CAPTCHA during sign-up?

Other sign up/sign in issues

CONDITIONS UNLISTED 

What if my condition is not listed in your patients network?

EMAIL NOTIFICATION 

How can I control my email setting and messages?

OTHER HELPFUL TIPS ON COMMUNITY FUNCTIONS AND FEATURES

SIGN UP / SIGN IN ISSUES

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How do I verify my email address?

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Your email address needs to be verified by you when you join a network.
 
1. Go to your inbox and find the email you received from the Ning Network.
 
2. Click on the “Click to Join” verification link in the email you receive. You will be taken to the network’s Sign Up page.
 
3. If you didn’t see an email, check your spam folder. Make sure your email settings allow you to receive mail from the network.
 
You can also search for this email by typing "mail@avmsurvivors.org" into the search field of your email provider.
Read more about "Verify Your Email Address"
 

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What if I registered an email that is invalid or has a typo?

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If you accidentally entered an incorrect or misspelled email address to sign up on a Ning Network, you’ll need to change it to a valid email address before it can be verified.
 
1.  Try to sign in to the Ning Network with this same email address and password.
 
2.  Instead of landing on the network’s Main Page, you’ll be redirected to a page with a message box saying, “Verify Your Email Address.”
 
3.  Click on the link that says, “Need to resend the email, change your address, or get help?”
This will take you to the “Problems Verifying Your Email Address?” message box.
 
4. Click on the second link on that page that says, ”Click here to change your email address.”
 
5. Enter your new, valid email address and confirm it.
 
6. Type in your password and click “Save.”
 
7. A verification email will now be sent to your valid or new email address. Click on the verification link in that email, and you should be all set to sign in to the network now with your updated email address!
 

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How can I reset my password?

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If you forget your password, you can reset it by going to your network as normal.
 
1.  Click on the “Forgot your password?” link and enter in the email address you used to sign up.
 
2. You’ll receive an email in a few minutes containing a link that will allow you to reset your password. If you don’t see the email in your inbox shortly, check your spam folder. Make sure your spam filters are set up to allow you to receive mail from Ning.com.
 
3. Click on the link in the email to reset your password. You will be taken to a new page where you can then create a new password for your email address. Click on the “Set Password” link to complete the process.
 

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How do I enter a CAPTCHA during sign-up?

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A CAPTCHA is computer-generated security code that helps deter spam by making sure you are a human being and not a computer or robot. It’s a required part of the process when signing up for a Ning account on Ning.com or on any Ning Network.
If you do not see a CAPTCHA when trying to sign up for a Ning Network, try the sign up page in another web browser.
 

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Other sign up/sign in issues

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I didn’t receive the email to verify my account
These verification emails are sent out automatically, but there are a few things that can cause them to not be received. You can learn more about them in this article.

“Email does not have an account” message when signing in
This message indicates that the email address being used isn’t attached to an active member on the network.
-Check the spelling of the email address
-Try another email address you have access to

“Your password is incorrect” message when signing in
-Try your password again (typing it elsewhere and copy & paste it into the text box to be absolutely certain)
-Check to see if Capslock is on (passwords on Ning Networks are case sensitive)
-Reset the password if you can’t remember it

Can’t see CAPTCHA or “your response did not match the words” message on Sign Up page
A CAPTCHA is a computer generated code used to deter spam bots. It can present itself on the Sign Up page, as well as when adding content from an account with an unverified email address.If you don’t see it, there are a few potential solutions:

-Make sure Javascript is enabled in your browser
-Double check your security and ad blocking software – installed applications and browser add-ons can block Javascript, which is required for proper network functionality
-Use the audio challenge (speaker icon) to see the keywords

If you are still unable to sign up or sign in after these steps, please let us know (send message at info@bensfriends.org) and we will be happy to investigate.
 

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CONDITION UNLISTED

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What if my condition is not listed in your "patients network"?

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If your condition is not listed, please join by signing up to our "incubator" RareDiseases.BensFriends.org
 
Rarediseases.Benfriends.org serves as an "incubator" for new communities of all diseases that do not yet have a dedicated community.  Initially, a group for each rare disease is created and when the group gets larger, a dedicated community will be developed. There are more than 250+ rare disease conditions in this community "incubator", you may find your condition listed within the Groups. In case, you did not find your condition, please feel free to create one by following the steps listed below.
 
1. To create a group, go to the Groups page, then click “Add.”
 
2. Next, fill in information about your group. Give your group a name and be sure to upload a group image that’s roughly square in size to avoid it getting distorted once saved.
 
3. Fill out a description for your group, which members will see when looking for groups to join.
 
4. On the right side of the page, choose which features your group will have.
 
5. Finally, choose whether or not members of your group can send broadcast messages to the whole group.
 
6. Click “Add Group” and your group will be added to the Rare Disease community.
 

EMAIL NOTIFICATION

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How can I control my email setting and messages?

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There are many types of notifications received through emails - some are received whenever there is a new activity that takes place.For example, you can receive email notifications when you have new private messages, new friend requests, when the Network Creator or group creator sends a broadcast message, when your content is being featured or when a new member joins the network or a group.
 
You can, however, choose whether you want to receive any, all or none of these notifications from you “Email settings” page.
 
Here are the steps:
You can turn off any or all email notifications being triggered by your Email Settings page.
 
1. To get to your Email Settings page, click on the “Settings” link in the right column of any page.
 
2. Then, click “Email” on the left. The next page displays all of the different types of notifications you’ll receive.
 
3. Control the email notification you receive by unchecking the email notification box you selected.
 
4. Finally, if you don’t want to receive any email notifications, you can check the box next to “I don’t want to receive emails from Ning Network Name” at the bottom of the page.
 
5. Click Save.
 
Read more about "Control Your Email Settings and Messages"


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OTHER HELPFUL TIPS ON COMMUNITY FUNCTIONS AND FEATURES

--------------------------------------------------------------------------------------------------

Here are some links to help you use some of the basic features of the site.

Blogs:

Introduction to blogs

How can I created and edit a blog

Chats:

Introduction to Chat

What is a chat bar?

Comments:

Introduction to Comments

Back to Top

This page is designed to answer some of the frequently asked questions to our community. 
 

--------------------------------------------------------------------------------------------------

FREQUENTLY ASKED QUESTIONS

--------------------------------------------------------------------------------------------------

SIGN UP/ SIGN IN ISSUE

How do I verify my email address?

What if I registered an email that is invalid or has a typo?

How can I reset my password?

How do I enter a CAPTCHA during sign-up?

Other sign up/sign in issues

CONDITIONS UNLISTED 

What if my condition is not listed in your patients network?

EMAIL NOTIFICATION 

How can I control my email setting and messages?

OTHER HELPFUL TIPS ON COMMUNITY FUNCTIONS AND FEATURES

SIGN UP / SIGN IN ISSUES

--------------------------------------------------------------------------------------------------

How do I verify my email address?

--------------------------------------------------------------------------------------------------

Your email address needs to be verified by you when you join a network.
 
1. Go to your inbox and find the email you received from the Ning Network.
 
2. Click on the “Click to Join” verification link in the email you receive. You will be taken to the network’s Sign Up page.
 
3. If you didn’t see an email, check your spam folder. Make sure your email settings allow you to receive mail from the network.
 
You can also search for this email by typing "mail@acutedisseminatedencephalomyelitis.org" into the search field of your email provider.
Read more about "Verify Your Email Address"
 

Back to Top

--------------------------------------------------------------------------------------------------

What if I registered an email that is invalid or has a typo?

--------------------------------------------------------------------------------------------------

If you accidentally entered an incorrect or misspelled email address to sign up on a Ning Network, you’ll need to change it to a valid email address before it can be verified.
 
1.  Try to sign in to the Ning Network with this same email address and password.
 
2.  Instead of landing on the network’s Main Page, you’ll be redirected to a page with a message box saying, “Verify Your Email Address.”
 
3.  Click on the link that says, “Need to resend the email, change your address, or get help?”
This will take you to the “Problems Verifying Your Email Address?” message box.
 
4. Click on the second link on that page that says, ”Click here to change your email address.”
 
5. Enter your new, valid email address and confirm it.
 
6. Type in your password and click “Save.”
 
7. A verification email will now be sent to your valid or new email address. Click on the verification link in that email, and you should be all set to sign in to the network now with your updated email address!
 

Back to Top

--------------------------------------------------------------------------------------------------

How can I reset my password?

--------------------------------------------------------------------------------------------------

If you forget your password, you can reset it by going to your network as normal.
 
1.  Click on the “Forgot your password?” link and enter in the email address you used to sign up.
 
2. You’ll receive an email in a few minutes containing a link that will allow you to reset your password. If you don’t see the email in your inbox shortly, check your spam folder. Make sure your spam filters are set up to allow you to receive mail from Ning.com.
 
3. Click on the link in the email to reset your password. You will be taken to a new page where you can then create a new password for your email address. Click on the “Set Password” link to complete the process.
 

Back to Top

--------------------------------------------------------------------------------------------------

How do I enter a CAPTCHA during sign-up?

--------------------------------------------------------------------------------------------------

A CAPTCHA is computer-generated security code that helps deter spam by making sure you are a human being and not a computer or robot. It’s a required part of the process when signing up for a Ning account on Ning.com or on any Ning Network.
If you do not see a CAPTCHA when trying to sign up for a Ning Network, try the sign up page in another web browser.
 

Back to Top

--------------------------------------------------------------------------------------------------

Other sign up/sign in issues

--------------------------------------------------------------------------------------------------

I didn’t receive the email to verify my account
These verification emails are sent out automatically, but there are a few things that can cause them to not be received. You can learn more about them in this article.

“Email does not have an account” message when signing in
This message indicates that the email address being used isn’t attached to an active member on the network.
-Check the spelling of the email address
-Try another email address you have access to

“Your password is incorrect” message when signing in
-Try your password again (typing it elsewhere and copy & paste it into the text box to be absolutely certain)
-Check to see if Capslock is on (passwords on Ning Networks are case sensitive)
-Reset the password if you can’t remember it

Can’t see CAPTCHA or “your response did not match the words” message on Sign Up page
A CAPTCHA is a computer generated code used to deter spam bots. It can present itself on the Sign Up page, as well as when adding content from an account with an unverified email address.If you don’t see it, there are a few potential solutions:

-Make sure Javascript is enabled in your browser
-Double check your security and ad blocking software – installed applications and browser add-ons can block Javascript, which is required for proper network functionality
-Use the audio challenge (speaker icon) to see the keywords

If you are still unable to sign up or sign in after these steps, please let us know (send message at info@bensfriends.org) and we will be happy to investigate.
 

Back to Top

 

CONDITION UNLISTED

--------------------------------------------------------------------------------------------------

What if my condition is not listed in your "patients network"?

--------------------------------------------------------------------------------------------------

If your condition is not listed, please join by signing up to our "incubator" RareDiseases.BensFriends.org
 
Rarediseases.Benfriends.org serves as an "incubator" for new communities of all diseases that do not yet have a dedicated community.  Initially, a group for each rare disease is created and when the group gets larger, a dedicated community will be developed. There are more than 250+ rare disease conditions in this community "incubator", you may find your condition listed within the Groups. In case, you did not find your condition, please feel free to create one by following the steps listed below.
 
1. To create a group, go to the Groups page, then click “Add.”
 
2. Next, fill in information about your group. Give your group a name and be sure to upload a group image that’s roughly square in size to avoid it getting distorted once saved.
 
3. Fill out a description for your group, which members will see when looking for groups to join.
 
4. On the right side of the page, choose which features your group will have.
 
5. Finally, choose whether or not members of your group can send broadcast messages to the whole group.
 
6. Click “Add Group” and your group will be added to the Rare Disease community.
 

EMAIL NOTIFICATION

--------------------------------------------------------------------------------------------------

How can I control my email setting and messages?

--------------------------------------------------------------------------------------------------

There are many types of notifications received through emails - some are received whenever there is a new activity that takes place.For example, you can receive email notifications when you have new private messages, new friend requests, when the Network Creator or group creator sends a broadcast message, when your content is being featured or when a new member joins the network or a group.
 
You can, however, choose whether you want to receive any, all or none of these notifications from you “Email settings” page.
 
Here are the steps:
You can turn off any or all email notifications being triggered by your Email Settings page.
 
1. To get to your Email Settings page, click on the “Settings” link in the right column of any page.
 
2. Then, click “Email” on the left. The next page displays all of the different types of notifications you’ll receive.
 
3. Control the email notification you receive by unchecking the email notification box you selected.
 
4. Finally, if you don’t want to receive any email notifications, you can check the box next to “I don’t want to receive emails from Ning Network Name” at the bottom of the page.
 
5. Click Save.
 
Read more about "Control Your Email Settings and Messages"


--------------------------------------------------------------------------------------------------

OTHER HELPFUL TIPS ON COMMUNITY FUNCTIONS AND FEATURES

--------------------------------------------------------------------------------------------------

Here are some links to help you use some of the basic features of the site.

Blogs:

Introduction to blogs

How can I created and edit a blog

Chats:

Introduction to Chat

What is a chat bar?

Comments:

Introduction to Comments

Back to Top

Discussion:

Introduction to the Forum or Discussion

How to participate in the forum?

Events:

How can I create my event

How can I edit my event's information

How to RSVP to an event

Groups:

How to create my own group

How to manage my group

How do I send messages to the members of my group

Back to Top

Manage Friends:

How can I add someone as my friend

How do I withdraw a friend request

Messages:

Introduction to Messages

How do I send a private message

How can I check my private message

Photos:

Introduction to Photos

How do I change my profile photo?

How do I change the order of photos in a slideshow?

Back to Top

Profiles:

How can I update my profile information?

Videos:

How can I add videos?

How can I add description to a video?

How can I edit information of the video I uploaded?

Back to Top

Discussion:

Introduction to the Forum or Discussion

How to participate in the forum?

Events:

How can I create my event

How can I edit my event's information

How to RSVP to an event

Groups:

How to create my own group

How to manage my group

How do I send messages to the members of my group

Back to Top

Manage Friends:

How can I add someone as my friend

How do I withdraw a friend request

Messages:

Introduction to Messages

How do I send a private message

How can I check my private message

Photos:

Introduction to Photos

How do I change my profile photo?

How do I change the order of photos in a slideshow?

Back to Top

Profiles:

How can I update my profile information?

Videos:

How can I add videos?

How can I add description to a video?

How can I edit information of the video I uploaded?

Back to Top