Kona nurse Jenny Decker, 38, left Honokōhau Small Boat Harbor, Kailua-in Hawaii on June 28, 2023. A recent article in BigIslandNow announces that Jenny is ready to circumnavigate…
According to a story from Greenock Telegraph, Michael Conway of Port Glasgow, UK lives with adrenoleukodystrophy, a rare disease. Recently he received a letter of support from William and Kate,…
Debbie Ferlito had always lived an active life. There was nothing she loved more than throwing herself into athletics, than testing the limits of her body. And she was…
According to a story from wtae.com, doctors didn't think that 11-year-old Bryson Ackermann would be able to return to playing baseball after he was diagnosed with acute flaccid myelitis, a…
At five years old, Traviana Dunston has cultivated a deep love and appreciation for music and dance. She’s an entertainer at heart: full of energy and light. Right now, Traviana…
Two days. That’s all it took for Jill and Jeff Ackermann to watch their son’s condition mysteriously deteriorate. On Saturday, six-year-old Bryson was the energetic, athletic, and bright-eyed little boy…
There are an estimated 10,000 rare diseases. A majority of rare diseases are genetically oriented. Because of this, we learn more about health and disease as we learn more…
Lonnie's mother, Stephanie Pesterfield of Colorado Springs, still finds it difficult to talk about her son Lonnie’s near-death experience. Yet as published recently in People, Stephanie and her son want…
Family gatherings can be fun, boisterous, and sometimes full of conflict. During one such event, Donnie Adams found himself intervening to break up a fight between two people. Although he…
Marco and India Biviano felt like something bad was happening to their young son Luca. His stomach was distended and painful. Luca frequently developed chest infections that required round after…
Congenital muscular dystrophy (CMD) affected individuals, Kelly Berger and Avery Roberts are making their voices heard. Together they hope to tackle misconceptions surrounding disability and give a loud voice…
On the field at the University of Tennessee, defensive back (DB) Trevon Flowers was known for his intense gameplay, strong athletic ability, and defensive nature. He appeared in 46…
At first, Tammy Ross thought nothing about messing with her fingernail on her thumb. It had become ingrown; the pain and swelling were too much to deal with. So Tammy…
When he thinks about his ideal career, Jaziel Olmeda imagines being in a sparkling clean, white hospital ward. His goal: to help children going through pediatric cancer diagnoses. To…
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…
14 touchdowns. 11.6 yards per carry (on average). 1st Team All-Conference. These accolades show how hard Luke Winterbottom, an all-league running back for Plymouth Whitemarsh High School, worked during…
Every parent hopes that their child will be born safely and healthily. But for one family in India, their daughter’s birth brought a host of concerns about her health. From…
From the time he was born until now, 6-year-old Jawn Fisher has been entranced by law enforcement. He loved the uniforms, the fight for justice, and the badges that…
As she stood in the garden, surrounded by friends and family, a splitting headache richocheted through Ciara Wilkie's head. Her vision blurred. At first, Ciara didn't think much of it.…
For the first year and a half of her life, Audrey seemed to be a healthy child. Her parents Tenneil and Tom had no real concerns about her health. So…
Not everybody understands 9-year-old Michael Martinez’s love for the police. For as long as he can remember, Martinez, who has cerebral palsy (CP), has been fascinated by law enforcement: the…
Nobody expects their child to be diagnosed with cancer. The idea of facing cancer at a young age can be shocking, terrifying. So when 4-year-old Ash Timmerman seemed slightly "off,"…
Caleb Castle-Parker was born ten weeks premature. At the time, his parents didn’t know how his prematurity might affect him (if at all) long-term. But Caleb seemed to be…
13-year-old Kaydence Bryant has always had a big personality. This easygoing teen is an honor roll student, loves playing Pokemon and Skyrim, and plays trumpet in the school band.…
There are at least 15 different types of dysautonomia, conditions characterized by autonomic nervous system malfunction. Normally, the autonomic nervous system plays a role in digestion, temperature control, blood pressure…
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