Written by Salem Taylor My name is Salem, I’m 43 years old, live in North Carolina and have hyperkalemic periodic paralysis. Growing up as a tall, awkward home-schooled kid was…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
When Alexander Barron (9) was first born, doctors told his parents that he would likely never walk. In fact, said doctors, Alexander would probably not be very independent at all…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
The first few years of Saylor Baysden’s life involved a good deal of medical confusion. Her family pursued testing, leading to two diagnoses in 2020-21: autism and epilepsy. But her…
Children all across the globe enrolled in a study to evaluate Upstaza, a gene therapy medication, for the treatment of aromatic L-amino acid decarboxylase (AADC) deficiency. As part of their…
Written by Everett Alms Before I turned 15 years old, my parents had already taken me to see the Grand Canyon, NASA’s Kennedy Space Center, Disney World, Universal Studios, and…
Reanna and Malaky always knew they wanted to start a family together. They tried for a while without success—so they were thrilled when they learned that Reanna was pregnant with…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
Boshamps Seafood & Oyster House has been serving Destin, FL with authentic Gulf seafood, well-mixed libations, and live music for years. But that isn’t the only way Boshamps has made…
For the first year of his life, Celebi Remillard and his mother Tatyana frequently took the drive from Klamath Falls to Portland to visit his care team. When Celebi was…
The Higbee family never planned to become rare disease advocates. But when their daughter Harlow began experiencing health issues, they knew that they would do whatever they could to help.…
When Sue Hitchmough first began feeling ill, she wasn’t sure what to think. Doctors told her that she had an ear infection, but antibiotics didn’t seem to fix anything. She…
When Harper Webb was just six weeks old, her mother Johnna grew concerned about the girl’s health—call it mother’s intuition. Harper struggled with sleeping and feeding. Johnna began taking Harper…
Written by Jenny, Life's a Polyp I come from a long family line of individuals with familial adenomatous polyposis (FAP). My family though would learn the most about FAP because…
In 2022, only around 63 cases of ECHS1, an ultra-rare metabolic disorder, were reported around the globe. A study published in the Annals of Clinical and Translational Neurology in 2015…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
In 2014, Adam Tate was a college student who was working as a scout leader. One day, he went on a trip with some others to go ziplining. However, his…
According to a story on msn.com, Alijah Cunningham is living with the rare disease Apert syndrome, resulting in the bones of his toes and fingers fusing together. Now three years…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
Stacey and Jason Chappell love their large family; there’s nothing they enjoy more than spending time with their five children, sometimes even going on fun vacations. But Stacey feels nonplussed…
16-year-old Tae’Von Perry has always been incredibly active in his local community: from acting as a worship leader at Encounter Church to singing, playing sports, and dancing with Company D.…
Nathan Barnica has always held a keen interest in and passion for bowling. He has honed his skills over the years through involvement in different team leagues. But in 2018,…
According to a story from people.com, beverage entrepreneur and former star on Real Housewives of New York City Bethenny Frankel has taken to the social media app Instagram to share…
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