Laabs' foundation and Aura Biosciences advance efforts to develop new and better therapies to treat rare cancer patients Read More
Meet the people at the heart of what we all do: the patients.
If you would like to share your patient or #patientdriven story, please contact Jessica Roche.
For me, it’s quite fitting that Rare Disease Day happens in February. It is also the month that I developed my rare disease. On February 2, 2004, I entered the hospital to have my thyroid removed. The next day, I left... Read More
A letter from Lindsey to her rare disease. Lindsey is a young woman living withFamilial Chylomicronemia Syndrome, a rare genetic disorder in which the body does not break down fats correctly. Read More
Chris Anselmo shares his journey with dysferlinopathy, a rare, muscle-weakening disease. Read More
When Bud Pickard, a dairy farmer in upstate New York, started to feel rundown and achy six years ago, he attributed it to the demands of his job. He was working 12 to 16 hours a day, and physical pains were not out of... Read More
Every year, 1 in 33 children is born with a physical, intellectual or genetic disorder. Michael Sawyer, now 17, was one of those statistics. Read More
Thirty years ago, Jean Walsh was diagnosed with Friedreich’s ataxia (FA)—a debilitating, life-shortening, degenerative neuro-muscular disorder. There was little understanding of the disease at the time, and no promise... Read More
Fifteen years ago, when cousins Cameron and Hayden Lord were diagnosed with infantile Tay-Sachs disease within three weeks of each other, the prognosis was devastating: no treatment, no cure. Read More
For Dr. Benjamin Seckler and his wife, Tracy, the decision to become influential players in the biotech world was driven by one goal: to save their child’s life. “Nothing can motivate you more than racing against the clock,”... Read More
When Monica and David Gow’s son, Thomas, was diagnosed with narcolepsy with cataplexy, they were determined to bring greater awareness to the disease and help in the search for a cure. Read More