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…
“I never thought that it could happen to me.” Unfortunately, we tend to repeat this refrain when facing unexpected hardships in our life from trauma to illness. For many people,…
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…
According to a recent article in People Magazine, this Illinois family has a dream: to turn amyotrophic lateral sclerosis (ALS) from a fatal to a chronic illness in Brian’s…
In January 2023, 23-year-old Angel Anthony Cortez was admitted to the hospital. His health had rapidly deteriorated over the previous days and his family was concerned. Following his admission,…
Sophie Hinchcliffe, best known by her online moniker of Mrs. Hinch, knows how to clean up a mess. After all, her cleaning skills are what launched her into popularity…
In 2019, South Carolina Governor Henry McMaster signed Dylan’s Law into effect. This law was passed in the wake of Dylan Emery’s death. The young boy had Krabbe disease, a…
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 2019, Adam Sorgi began teaching psychology, health sciences, and AP psychology at Capistrano Valley High School: the same school that he had attended as a teenager. That same…
Written by Kathleen Leatherbury Hi, I'd like to share my story. In hopes of 2 things. To find help and to hopefully help others. I apologize in advance, as this…
When Taya Crowell first began feeling fatigued, they didn’t feel too worried. After all, Crowell had just changed schools and was grappling with a suddenly heavier course load. But by…
Written by Lisa Matthews I know I am not alone in my suffering…Recently, I read an article published in 2018 by The National Library of Medicine where it was estimated that,…
Written by Lacey Woods From a young age, I knew I wanted to be a mother, to have biological children and also to adopt. This desire stayed with me throughout…
Céline Dion’s new milestone is her first-ever film, Love Again, which she stars in while living with a rare disease called stiff person syndrome. Céline expressed her wishes that…
We all dream about finding the absolute love of our life: the person that makes us feel warm and supported, the one we can't imagine our world without. For…
According to a story from CBS News Boston, Scarlett is just six years old and was recently hit with a devastating diagnosis: Batten disease. Unfortunately, very little can be done…
WebMD recently carried a story about a young woman who, after nine years of wheelchair confinement caused by a rare metabolic disease with no name, was able to walk…
The energy in the crowd at American Family Field was electric. Everybody sat on the edge of their seat, waiting for the game to begin. If you’ve never been to…
John knew from an early age that he not only loved music but had confidence in his musical ability. However, there was another very troubling issue in his life. John…
At first, the round black dots that Carmen saw spattered across the bathroom sink were frustrating, but not concerning. Since her grandchildren were staying with her, Carmen assumed that something…
Thirty-year-old Brendan O’Reilly was told that his rare disease affects only one person in 250,000. He was also told that he is lucky to be alive. Brendan’s symptoms confused…
7-year-old Peter Heath loves to tell jokes, play with Legos, hang out with his friends, and spend time outside. Guided by his white cane, which Peter aptly named Marshmallow, Peter…
On May 7, 2023, Kimberly Kotar completed a half-marathon. That’s impressive in its own right—only more so when you learn that, due to her transverse myelitis, Kotar was once unable…
In March 2023, 14-year-old Rylie Erbacher visited Washington, D.C. for a one-of-a-kind experience. The teen, who has spinal muscular atrophy (SMA) type 2, was one of just 10 people nationally…
Written by Lily Sander By the time I was age four, I started experiencing unexplained symptoms such as severely turned in feet, which caused extreme pain and mobility issues. Terrified,…
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