What would you like others to know about life with a rare health condition?
If you have an iOS device (e.g., iPhone, iPad), you can record your video health story using our Health Stories Project video app. Here’s how:
- Search for “Health Stories Project” in the App Store on your iOS device and download our app.
- Register with an email address. We will use this to contact you if something goes wrong with your video.
- Watch the tutorial video for inspiration and tips on making your video look and sound perfect.
- Choose the 'Share Your Voice' story type
- Answer this questiton: "What would you like others to know about life with a rare health condition?"
- Record and upload – Make sure to keep the app open until the video has fully uploaded.
- Sign a consent form – If your story is accepted for publication, we will need permission to share your story. We will send you a link to e-sign our form. We may also be in touch if we have any questions or problems with your videos.
Please note: Unfortunately, we can’t publish every video that we receive. However, as a member of Health Stories Project you will still receive more opportunities to share your story as they come along.
Questions? Reach out to us at team@healthstoriesproject.com.
There are more than 7,000 rare diseases. Each is unique, but there are many commonalities that unite patients, families, caregivers and supporters. In the spirit of raising awareness of rare conditions, we would like to share your unique story.
Your experiences with treatment, giving and receiving support, and living with a rare condition have the power to help others.
Why share your story?
“I’d like those who are very very sick with pulmonary arterial hypertension to know that I was extremely sick with it too[…] Then we were able to find another drug that actually helped get my life back and I was able to get back on the tennis court.”
– Kathryn, Pulmonary Arterial Hypertension
Stories From Our Community
