Patient Voices

While we may have enough clinical information about rare diseases, it is equally important to listen to the life stories of people with rare diseases. Life stories are patient voices of what it is like to live with a rare disease and face everyday challenges.Patient voices chronicle their experiences and give us an idea of the nuances and many complexities of living with a rare disease. How do our communities react to people with rare diseases? Are they included in all life activities? How does family support enable and empower? What should our communities be doing for people with rare diseases? These are the many questions that life stories raise and it is interesting to see how each individual and his/her family and friends cope with the issue and support the person.

Patient voices are a symbol of courage and serves to inspire all of us to push beyond all boundaries to achieve the best we can with whatever limitations.

Featured Patient Stories


All Patient Stories

My story with Osteogenesis Imperfecta

I have Osteogenesis Imperfecta (also known as OI), a condition that causes brittle or fragile bones and possible hearing loss, brittle teeth (Dentenogenesis Imperfecta), short stature, physical def...Continue Reading

Zoyeb's story of living with Spinocerebellar Ataxia

Spinocerebellar ataxia refers to a group of hereditary ataxias that cause degenerative changes in the part of the brain related to the movement control (cerebellum) and sometimes in the spinal cord...Continue Reading