The Binder family never expected that their 12-year-old twins, Grady and Jace, would be diagnosed with a rare genetic disorder. In fact, this particular disorder is so rare that it…
For the first six months of his life, Miller Gamberi seemed to be a happy, healthy boy. But his health suddenly shifted; Miller stopped wanting to eat and drink. His…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
The agency in Guangzhou, China, that arranged three-year-old Shelby’s adoption by a family in the US disclosed to Michelle and Adam Campbell that Shelby had beta thalassemia disorder. Yet, that…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
For the first six months of his life, Oliver Mills seemed to be developing fairly normally. He was a happy, bubbly baby. His mother Laurel found joy in every smile,…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Written by Melany Sanchez Hello, my name is Mélany, I am 18 years old and I am from Cuba, a very poor island in the Caribbean. I was born with…
Written by Adam Faatz Imagine not being able to breathe and spending nine days climbing the world's tallest freestanding mountain. That is my story, and that is my goal. Sixty-five…
Nathan Ehrlich, age 40, has had more health troubles than the average person, to say the least. As a teenager, he was diagnosed with leukemia. Thanks to the support of…
According to a story from Grimsby Live, the family of six year old Melissa Stark, who has Williams syndrome, has transformed their house into a Santa Claus themed wonderland of…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Health professionals continually warn the public to take steps to guard against sunburn. We often hear the expression “one in a million.” The phrase and the warning truly pertain…
Written by Martha Harlam My journey with Ataxia has been a life full of ups and downs. Ataxia has defined most of my life since it was first diagnosed in…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Four-year-old Emmett Doucette is currently fascinated by firemen, dinosaurs (he has a favorite T-rex toy!), and toy race cars. He’s known to wear a fun fireman outfit and he loves…
For months, 47-year-old Jane Lightfoot struggled with what she thought was a nasty ear infection. The spot behind her right ear ached; she was dizzy, couldn’t hear well, and the…
According to a story from The Print, Neha Shoriwala, a mother from New Delhi, is urgently seeking help for her son Harshil, who lives with Wilson's disease, a rare illness…
Josie Lawrence, a 42-year-old comedian and actress residing in East London, UK, has adopted an unconventional training routine for her even more extraordinary walk along the Great Chinese Wall,…
James Higgins' father was diagnosed with brain cancer in 1965. At that time, there was basically no treatment for brain cancer, and about a year after the diagnosis, he was…
When 38-year-old Shereen-Fay Griffin went to the local swimming pool, she was hoping for some fun and relaxation. Instead, she contracted a rare but serious infection that left her blind…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Written by Adam Faatz Imagine not being able to breathe and spending nine days climbing the world's tallest freestanding mountain. That is my story, and that is my goal. Sixty-five…
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