Alexis Loveless is a 14-year-old from Louisville, KY who was recently diagnosed with Long QT syndrome. Now, she's doing her best to raise awareness by sharing her own story of…
According to a story from MSN, mother Vanessa Ruiz is facing a terrifying choice: feed her family or pay for the genetic testing to confirm that her children Faith and…
The symptoms of terminal pancreatic cancer are subtle. The disease is usually not diagnosed until it has substantially progressed, leaving a dismal five-year overall survival of five to ten percent.…
According to a story from USA Today, Mark Hoppus, bass player for the iconic pop-punk band Blink-182, was recently diagnosed with a rare cancer: diffuse large B-cell lymphoma. His cancer…
This question is what the doctors at Massachusetts’ Cambridge Hospital were trying to determine. According to a recent article in the New York Times, a twenty-two-year-old man was rushed to…
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.…
33 year old Emily Helm from Brandon, Mississippi, had always learned that many of her family members on her father's dealt with bone weakness, joint problems, and pain. It was…
Seven years ago, when Hunter Parrick was 10 years old, he went for what could've been a routine ear surgery. However, during the surgery, doctors found out that Hunter was…
Access to treatment is an issue for patients across the world, especially for those with rare diseases. Laurie Young, who was diagnosed with type 2 spinal muscular atrophy (SMA) at…
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…
Ally Winter was diagnosed with short bowel syndrome when she was four years old. Now, she is 17 years old and working to raise awareness for rare and chronic illnesses.…
We're learning more and more about COVID-19 every day. One thing that we're discovering as the pandemic continues is the complications that may arise after recovery. Chronic fatigue syndrome, brain…
Jo Blaney was diagnosed with cyclic vomiting syndrome when she was pregnant with baby number four. She is now striving to bring awareness to the condition, which impacts patients' daily…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
According to the Centers for Disease Control, one in ten people are carriers of a disease-causing bacteria called Neisseria meningitidis. In most cases, they will not experience adverse effects. However,…
According to a story from nbcnewyork.com, A resident of Sussex County, New Jersey has recently tested positive for a rare infectious disease called Jamestown Canyon virus, or Jamestown Canyon encephalitis.…
A two-month-old baby recently traveled to Dubai to receive treatment at Al Zahra Hospital Dubai (AZHD), according to an article in the Khaleej Times. The child, who is from Oman,…
Mark Dalziel has big plans for this weekend; he's going to bike the length of Scotland within two days. He has a very good reason for doing so, which is…
Mal de débarquement, or "sickness of disembarkment," is a phenomenon which causes a bobbing, rocking, or swaying sensation, alongside other symptoms. With many people, mal de débarquement only lasts…
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…
You may know Jessie J from some of her hit singles like "Price Tag" or "Bang Bang," but did you know that she is also a rare disease patient? She…
The Quincy community is helping to organize a bone marrow registry drive for a local teen who was recently diagnosed with hemophagocytic lymphohistiocytosis (HLH), according to an article in The…
At just four years old, Gabriel Spiro is facing his 3rd open-heart surgery. You see, Gabriel was born with hypoplastic left heart syndrome (HLHS), a rare and severe congenital heart…
The seventy-seven-year-old patient, Mr. S., had lived with chest discomfort for twenty years. Since bypass surgery or stents were not an option, his cardiologist managed to ease his discomfort through…
According to a story from the Bognor Regis Observer, 25 year old Kieren Rogers had his first stroke last August. It was a minor event, but he still needed to…
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