My Duchenne Backpack is a new groundbreaking app built for the Duchenne community by the Duchenne community. My Duchenne is a tailored version of the Backpack Health app, making it easier for Duchenne patients and their families to create, own and control health data in a way that makes sense for them. Users are invited to join the international Duchenne e-community and reach the data they need in a way that is meaningful for their lives. Medical professionals and researchers alike can engage patients and access up-to-date data that is critical for improving treatment.
The physical, emotional and financial strain of Duchenne is significant. On top of this, parents often manage huge binders with their child’s medical information. We need to offer them a tool that relieves this stressor, enabling them to communicate with medical professionals across the world and track data patterns in a meaningful way. This is where My Duchenne fits in. It is our duty for the Duchenne community to continually improve the way we meet the individual needs of each caregiver and child, and give them the freedom they had before the diagnosis.
About BackPack Health
Backpack Health is a health tech company building tools to help people manage their health details, care and communication. We believe everyone should be able to track their own health comprehensively, and do the same for the people they care about – no matter what their health concerns are, no matter what family means to them, and no matter what language they speak – all in one place.
We won’t share or sell your personal information: We won’t reveal your identity or share your personal information (including your email) with anyone without your permission.
We will use data anonymously to improve Backpack Health: We’ll collect bits of information along the way to improve our services (like cookies, usage data, etc.), but those will not be connected to any of your personal information.
We may use data anonymously for research and marketing: We may share or sell de-identified data for the purposes of research or marketing, but we go through a rigorous process of making sure that nobody can connect that data to you.
We will get your permission to email you: We’ll get your permission to send you emails about about new features, helpful tips, or information about partnerships between Backpack Health and other companies, including information about products that may be of interest to you. For any of these non-service related emails, you can change your mind and stop receiving them at any time.
We always tell you the reasons we’re collecting info:
Date of Birth
We ask for date of birth to make sure users are old enough to use Backpack Health. We also use this information to learn about the demographics of our users.
Gender and Birth Sex
We ask for gender to personalize Backpack Health and also to learn about the demographics of our users. Researchers use this anonymous data to better understand the health needs of different populations and work towards resolving disparities in care.
We ask for country or U.S. state of residence to learn more about the demographics of our users. We also use this information to ensure we are meeting any legal requirements specific to your location.
Race and Ethnicity
We ask for race and ethnicity to allow users to express it if they want to, and also to learn about the demographics of our users. Researchers use this anonymous data to better understand the health needs of different populations and work towards resolving disparities in care.
Let us know if you have questions at firstname.lastname@example.org. We’re always here to help.
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