It's EASY! On a computer click on your name at the top right of the page!


On a mobile you will find it when you click the three small lines on the top left (sometimes called a hamburger)

When 1 is selected you will see and be able to edit the options of 3-9.

As an overview:

3 -  Select #3 then click edit profile. This is where you can update ALL your information including contact information, language preference, add family members (on family accounts) update the status of your Disability Tax Credit application if we are assisting you, include your social media links for networking, and add Groups you would like to be included in. With the exception of first and last name, everything on this page stays private until you unlock (if you choose) for your directory profile. (what is visible to others) You can change this information in #4.

4 - After clicking #4 then edit profile - you may change any of information that is stored in your profile. We have allowed first and last names to show, but you may remove this if you wish! EVERYTHING ELSE on screen 3 will stay private. (until you change that). Are you ok with people finding your name based on a search of provinces? Would you be ok if they emailed you? You can update this information to be seen by just members, or anyone at all. Until you update this is sharable, it remains private. (You can see what has been shared by looking at #2 Your directory listing)

5- Choose this, then edit profile if you wish to change your subscription settings (Do you want the newsletter, event updates etc). Please note: You can only access Message Board or FORUM updates if you are a full member (paid subscription)


Updating your profile is important to our new platform!

(continued from previous column)

6- You are able to upload photos to the site. We recommend photos of those in your family with or without PKU. Bonus: If they are at an event! We will monitor photos and request that they remain family friendly. We can disable your ability to upload photos if this is abused.

7- Once you register for events on our site, they and related information will appear here.

8 and 9 - Any payments made to CanPKU will appear here - this will include invoices for membership and donations. Please note, as we transition from the old platform - fees paid before they change over may not appear here. If concerned, contact tanya.chute@canpku.org

#2 - When you select "My Directory Profile" it will show you what you have made public for others to see.

This new website is able to be catered more to your needs, but we need your help to do this.

First, transferring data from the old system to the new system... things may have been messed up a bit. We noticed that we have a a a lot of people listed as "friends of PKU" when we know they should be "I have PKU" or something else.  With the introduction of "family memberships" we may currently show a parent with the DTC information filled out on their record and not their child's record where it should be. We kindly ask for your help in cleaning up these records.  

Second, we have linked family accounts where we could. (Again, we are human and mistakes can happen) If you see that you are an "individual" membership and you feel you should have a "family account" please let us know. Why would you need a family account? You are a parent of a PKUer. You are an Adult and either have PKU or have a spouse with PKU. You are a grandparent of a PKUer. We will link the accounts so only one membership fee is needed for each family. Saying that - it does create more records, which costs us more. We kindly request that you limit your family records where possible. Anyone wishing to be active on the message board and signing up for events, can have an account (siblings, children, parents, self etc).  Anyone in the family who needs the benefits for attending events, but would not use the website - please list these individuals in the "Other Family Members" box to save us a bit of money.  Anyone needing/wanting their own profile/record will need their own active email address to be added (yep, even the babies). Those that have been added due to import, but do not have their own email will be "cleaned up" in a couple months. Please be sure to add emails to  your kids profiles to prevent getting lost. Let us know if you need members added to your account by emailing info@canpku.org

Third, and lastly, there is an area to sign up for "groups". This will allow us to send information that interests you to you without sending it to someone who would not be interested in the subject. (Example Maternal PKU, Preschool PKU). We often network with other organizations, but as it is our policy to not share your information with them - this will help us send targetted information to you. (Example: Teens were recently needed for an advocacy focus group that paid them for their time and efforts. If your teen show on their record they have PKU and have clicked on Teen with PKU - We can send a direct email to them!)

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