On June 24, 2020, Savanna Wrobel was born. She came a little early as a premature baby: 35 weeks and 3 days. But that didn't stop her parents, Wade and…
When Karter was first born 14 months ago, his mother Breonna was overjoyed. But she quickly realized a series of upcoming obstacles when, at birth, Karter was diagnosed with Alagille…
Community support can be extremely uplifting and important, especially when one is impacted by a rare disease. This is the case for three-year-old Charlie Fry, who was born with SLC6a1.…
About five months ago, Lexi Robins was born in the United Kingdom. She didn't show any signs of abnormal development at first, besides the fact that her thumb didn't move…
When Taylor Brown was just two years old, her mother TaMetress Reed began noticing certain symptoms, such as hardening and tightening patches of skin. As Brown grew up, the symptoms…
Cure Rare Disease is a nonprofit organization that aims to help those who are impacted by rare diseases. Currently, the Boston-based company is planning a fundraiser to celebrate all of…
When Gwen Dillon's son, Aaron, was just 1.5 years old, he was diagnosed with craniosynostosis, a birth defect in which the bones of a baby's skull close early. According to…
Sawyer Burch is a four-year-old boy from the Nashville, Tennessee area who was born with trifunctional protein deficiency, a rare disorder that takes the body's ability to utilize certain types…
Julia's Wings Foundation is gearing up for the Operation Wear Red Campaign in an effort to raise awareness for the rare blood disorder aplastic anemia. From the first of March…
Vance Robinson was diagnosed with inclusion body myositis over ten years ago, and since then he has worked to raise money and awareness. Pre-pandemic, Vance would throw the first pitch…
Elloise Charles has set out on a mission to raise awareness and money for progressive supranuclear palsy (PSP) after her father was diagnosed. His journey to diagnosis was similar to…
Charlie Fry is a three-year-old from Kansas City living with SLC6A1. His family is very active in the SLC6A1 community, even starting a nonprofit titled "A Cure for Charlie." They…
Dan Hopkins is a bowler who has recently raised over $21,000 for cystic fibrosis (CF) in a 65 hour long bowl-a-thon. While he may be exhausted and sore, he is…
According to a story from The Garstang Courier, Joshua Brandwood of Lancaster, UK has begun organizing a 5K run as a fundraiser for the family of Lexi Tindale, a girl…
Kelly and Rory McElligott, of Highton, Victoria, Australia, have 3 beautiful children: Maggie, Billy, and Alice. But the family was shocked when two of their children, Maggie and Billy,…
Linda Ramsey had a son named Kevin. In the beginning everything was okay, and Kevin grew normally for a short time. After a few months, his experienced difficulty swallowing. He…
Dear UK businesses and decision makers within them, I know it’s mental health awareness week but for my benefit could you for just a couple of minutes focus on the…
The Penn Medicine Orphan Disease Center invites you to Rare Disease Day with the 5th Annual Million Dollar Bike Ride in Philadelphia, PA. Cycle with fundraising: FREE Cycle without fundraising:…
In honor of Rare Disease Day arriving this month, the Organization for Rare Disease India (ORDI) has set up Racefor7 races in both Benefaluru, Mumbai as well as Washington D.C.…
Patient Worthy recieved a note from CMT Warrior and Patient Worthy Contributor Quentin Martin of a worthwhile cause, that we think all our readers should know about! Quentin writes: If…
At six years old, Benny was unable to sit up, roll over and scoot like other babies his age. Missing all the major milestones, his mother Jennie knew that something…
Just like any other 7-year-old little boy, Ethan Perkins has big dreams. He loves trucks and reading, and wants to study fossils as a paleontologist reported KXLY. He also wants to be…
Originally reported by KVUE ABC, the race is on for the Rosenberg family to raise the funds that will benefit their 3-year-old child suffering from a rare brain disease known…
A teen suffering from a rare disease is receiving some holiday love from kind strangers. When Nathan Kelley started losing his hearing, he knew something was wrong. At first, him…
When Raeno Brendtro was asked to sit down after her diagnosis, she refused. She needed to stand for as long as she could, now that her time was limited. The…
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