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:

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
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Rare Diseases

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

“Some days you get defeated, right? When I don’t feel the best, sometimes I just try to smile. I find that if I put a smile on my face, my spirits will come up and everything will turn around.”
Coel Peach
Acute Myeloid Leukemia
“I try not to let her limitations stop us from doing what we want to do. If I want to go hiking, we do it. She loves to be outside, just loves it.”
Margaret Miller
Pontocerebellar Hypoplasia Type 1B