Sophie had a wish, and this month her mother is going to parliament to fulfill that wish. Sophie’s death has brought about the first House of Commons debate on childhood…
When they found out that they were having a son, Nash and Callie Horne were thrilled. They even decided to name their son Nash as well. But then an unexpected…
According to a recent article, 82-year-old Veronica Jones is working to break the laziness stigma that surrounds a myalgic encephalomyelitis diagnosis. Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Myalgic encephalomyelitis (ME),…
Her brother, her sister, and her father - all people that Salima Mohip lost before they turned 43. Each of them passed away from heart attacks, a consequence of their…
According to a recent article, 17-year-old Diego Ramirez was able to compete in the Flying Pig Marathon despite his Duchenne muscular dystrophy diagnosis. Duchenne Muscular Dystrophy (DMD) Duchenne muscular dystrophy…
Fundraising is extremely important when it comes to rare disease research, and recently a community came together to help a little boy living with Sanfilippo syndrome. Simon is 5 years…
It’s no secret that teachers can make a huge impact on the students in their classrooms. And that’s just what Judy Griffin did for her student Ashley. When Judy started…
According to a recent article, a man in Maine has died after being bit by a tick and contracting the rare Powassan virus from the bite. Powassan Virus Powassan virus…
When David and Melissa Wickham found out that they were expecting, the pair was thrilled. They had already been together for years – it took seven to conceive their daughter,…
The joy of watching your child grow and meet developmental milestones is not always granted to some parents. Clare’s mother, Allison, described her emotions to CHOP after noticing that Clare…
A recent article highlighted the struggles of a man in South Yorkshire who has lost multiple jobs due to his diagnosis of cyclical vomiting syndrome (CVS). Cyclical Vomiting Syndrome (CVS)…
Christine Harrison, a grandmother from Poringland, has recently passed away due to progressive supranuclear palsy (PSP). She led a full, rewarding life filled with family and love. She's survived by…
Aiden Collyar, a nine-year-old from New Hampshire, was recently presented with a donation that would allow him to do something he loves: play sports. After he was diagnosed with the…
The process of an organ transplant is a long one, and I'm not just talking about the procedure itself. For many patients, the majority of the time is spent waiting…
The diagnosis of rare diseases can be difficult; they may share symptoms with other disorders, many are not well known, and many don't have specific diagnostic processes. Ankylosing spondylitis acts…
From 2010-2013, Abi Phillips embraced the role of Liberty Savage on Hollyoaks, a British fictionalized TV series about the lives of teenagers and their families. The program has since been…
Imagine the highs and lows that accompany the doctor’s announcement that your sweet, innocent two-year-old daughter has leukemia. The good news is that your daughter has the type of leukemia…
According to a recent article, the sudden death of Cavan woman, Leah Farrelly, shocked her family, friends, and community after living with Long QT syndrome for 9 years. Long QT…
A recent article shared the story of a woman diagnosed with cystinuria whose life was saved after her younger brother donated one of his kidneys. Cystinuria Cystinuria is a rare…
A parent never wants their child to endure a medical issue, much less one as serious as bacterial meningitis. Unfortunately, Jay Aston - a singer from Bucks Fizz - has…
When J.B. Lacombe's son was born, he showed signs of jaundice. Jaundice, caused by extra bilirubin in the blood, results in the yellowing of the skin, eyes, and mucous membranes.…
Recently, an article highlighted one man’s life journey after being diagnosed with rare cervical dystonia. Dystonia Dystonia is a chronic movement disorder, existing in the same family as the more…
According to a recent article, a child with biliary atresia was able to celebrate her first birthday following her liver transplant. Biliary Atresia Biliary atresia is a condition occurring in…
When Isabel Blevins was just 16 years old, she caught the flu. While she recovered well at the time, her health seemingly went downhill after this incident. Suddenly, Isabel was…
If your life goes awry, do you trust your community to stand by you? Luckily, for 6th grader Ethan Chandler, his Carterville, Illinois community jumped in to help when he…
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