Getting Started with your Backpack

(Above: Example of patient with Diabetes)

What you’ll need:

Signing up with Backpack Health can be a great step on a PNH patient’s journey of empowered conversations and control of your health information. To sign up, here’s what Backpack Health will need to know:

  • Name
  • Country
  • Date of birth
  • Gender

Once you’ve signed up, you can finish your profile by adding your race/ethnicity, and blood type (all optional).

Anytime Access to PNH Health

Through our partnership with Backpack Health, we are able to provide a secure health data management platform to help members of the PNH community manage and share their medical information, and gain better access to patient-specific resources. Backpack Health is a unique tool that helps you keep track of all of your health information so that it’s portable, manageable, shareable, and translatable. And, by joining the Anytime Access to PNH Health Group on Backpack Health, you’ll also have the opportunity to connect with others living with PNH in Canada, and around the world, and make a difference together. In the future, the Backpack Health platform will also serve as the first patient-led disease registry in PNH anywhere in the world, allowing patients to contribute to important research advances.

Medical ID Integration

A Medical ID bracelet or necklace can save your life by providing access to your vital health information when you can’t speak for yourself. Understanding that your information will evolve and change over time, Backpack Health has created an easy way to link your Medical ID accessories to your Emergency Share Card. That way, when you update your Share Card, anyone with access to your Medical ID accessory registered on Backpack Health will also have access to your most up-to-date info. And, your health information can be translated to multiple languages, another great feature to have when you travel.  Learn more

Join the Anytime Access to PNH Health group

If you’ve already created your Backpack profile: 

  1. Navigate to Groups from the main menu. 
  2. Select the plus (+) icon and search for a group.
  3. Search for “PNH”.
  4. Select the “Anytime Access to PNH Health” group. 
  5. Carefully read the group information. You will be required to understand and agree to any eligibility criteria and data sharing implications. Learn more about those here.
  6. Agree to the group terms, eligibility, and data sharing.

If you have not created your Backpack profile: 

  1. Click on the Get Started button below. 
  2. Select Join Us and follow the sign up process.
  3. Carefully read the group information. You will be required to understand and agree to any eligibility criteria and data sharing implications. 
  4. Agree to continue.

If you have any questions about Backpack Health or the “Anytime Access to PNH Health” group, please email