There's no medical term for what I've got.
In 2002, my daughter was diagnosed with a rare form of colon cancer. And it was such a shock, a surprise to us.
My dad has had a rare form of leukemia since I was in about 7th grade. But they've come up with some amazing drugs since then and he's doing really well today.
I have two children of my own; I can't imagine anything more horrific than to have a child suffering with EB.
I have this thing called hereditary neuropathy with liability to pressure palsies. It's incredibly rare.
The name of my condition is Cartilage Hair Syndrome Hypoplasia, but you can just call me Billy.
Hansen’s disease”—that’s the other modern name, I guess, for leprosy—“Hansen’s disease was so rare in the America that in 40 years only 900 people were afflicted. Suddenly, in the past three years, America has more than 7,000 cases of leprosy
I'd like to focus on my life on creating new medicines for people who are suffering from rare disease.
You can't pick up the telephone and say, 'Connect me with someone else who has a kid with leukemia.'
I was the first person in NYU Medical Center's history to be diagnosed with NMDAR encephalitis.
When I was born in 1970 with a rare genetic disorder called spondyloepiphyseal dysplasia congenita (SED), medical science wasn't what it is today and my mum and dad were treated terribly by the medical profession.
Some maladies are rich and precious and only to be acquired by the right of inheritance or purchased with gold.
We are people with all the hopes, dreams, passions, and faults of everyone else. Eighty percent of us are born into families with no history of dwarfism.
I had scarcely met Stephen, and then one Saturday I met some old friends for coffee, and they were saying, 'Gosh it's terrible about Stephen, isn't it?' They told me that he had been in St. Bartholomew's Hospital in London having horrible tests and then had been diagnosed with an atypical form of a rare disease - motor neurone disease.
Maybe I don't have the most common kind of motor neuron disease, which usually kills in two or three years.
I was born with Kallmann syndrome. I have never complained about it, as I can't do anything to change it - and I wouldn't have acquired the voice that I have.
Let me claim that Africa and I kept company for a while and then parted ways as if we were both party to relations with a failed outcome. Or say I was afflicted with Africa like a bout of a rare disease from which I have not managed a full recovery.
I have a condition that is included among the 200 or so classified as Dwarfism.
Not only I am an adoptee, but I also want to prove to everyone that being legally blind with a rare eye disease called Nystagmus that you can do and be anything if you put your mind to it and believe in yourself.
My disease is a very rare form of muscular dystrophy, called disautonomic mitochondrial myopathy.
A disease that has never been seen before cannot be cured with every-day herbs.
It is something that is called MDS. It is a rare blood disorder that affects the bone marrow. I'm going to beat this. My doctors say it and my faith says it.
To hear the words 'autoimmune encephalitis' in a movie is amazing to me, and I'm so proud.
If your doctor tells you you have a rare disease that he or she has never seen, if you've got an incurable cancer, boy, don't accept that. You know, go and get a second opinion.
I took care of young adults with cystic fibrosis when I was in my residency training and found this to be a disease that was desperately in need of some explanation.
