Some scientists never have the opportunity to meet a single patient in the community of the disease they work their entire lives trying to understand. This can make them feel…
For millions of Americans who are affected by rare diseases, hope and health lies in the availability of plasma donations. One use of the donated plasma involves the extraction of…
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A recent article in the Taunton Gazette describes the dilemma faced by the parents of four-year-old Jaxtien Miller who is a metachromatic leukodystrophy patient waiting for a stem cell…
As originally reported in Mirror, when Sian Hopper was in secondary school, she began to get headaches. She attributed them to stress: she had been studying for her GCSE exams,…
People who live with rare diseases have found that it is often difficult to get a diagnosis. Doctors look to common issues before they consider diseases that affect an…
According to a story from USA Today, Thanksgiving 2009 was a harrowing time for the Anderson family. About a month earlier, Darrin and Sarah Anderson's oldest son Henry had died…
Finding the correct doctor for treatment can be difficult, especially if one has a rare disease. Because few doctors specialize in rare diseases, they are often spread across the…
When Lucinka was born, it seemed like everything was all right. But it wasn’t. Lucinka wasn’t doing well, and a whirlwind of examinations began. First, a diagnosis couldn’t be made.…
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Amber’s determination to find a miracle for her son Maxwell is detailed in a recent BuzzFeed article. Maxwell and his twin sister, Riley, were born in March 2017. For…
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An article in the Hartlepool Mail announced that Lyla O’Donovan, her parents, and her four brothers and sisters will be celebrating Lyla’s seventh birthday on November 28th, 2019 at…
East Anglia's Children's Hospices in Norfolk, U.K., has recently opened up its new facilities after renovations. To celebrate this opening, Kate Middleton, the Duchess of Cambridge, visited and spoke…
According to a story from dailypost.co.uk, Richard Mason, the millionaire founder of moneysupermarket.com, and and baker Alison Faire's daughters Annabelle (aged 4 years) and Imogen (aged 7 years) don't have…
According to a story from People, Will Yun Lee plays Dr. Alex Park on the medical drama television series The Good Doctor. Although he isn't a doctor in reality, Mr. Lee has…
According to a story from Soweto Urban, mother Lebohang Leuta is no stranger to the challenges that come with raising and taking care of a child with a chronic rare…
According to a story from The Squamish Chief, mother Emily Tomlinson is amazed by the capabilities of her three year old son Nash Smillie. Nash was born with a severe…
When your child is constantly at risk of hypoglycemia and their health and life is threatened in the case of any major problem, you have no other choice but to…
According to a story from wptv.com, young mother Sierra Henderson, whose first child is just 18 months old, reported to an urgent care facility recently with some unusual symptoms: a…
Gracie Mellalieu, a twelve-year-old girl from Wales, is excited to headline the Christmas concert at St. Asaph Cathedral. This accomplishment comes after Gracie gained attention for a thank you song…
Gina, a 14-year-old Jewish girl, had familial dysautonomia when she passed away. She was described as a having a 'positive and upbeat attitude' and enjoyed spending time with her older…
According to a story from metro.co.uk, Harley Bond was three years old when he was first diagnosed with Sanfilippo syndrome type B, a rare progressive genetic disorder. Now five years…
Nobody expects a shocking diagnosis for their significant other right before one of the most important days of their lives. Ariona Kryeziu's life was altered significantly when her fiancee, 20-year-old…
According to a story from The Times of Israel, Jenni Kleinman Berebitsky died the past August at age 43 due to complications of amyotrophic lateral sclerosis (ALS). The woman was…
According to a story from Eye for Film, Mindy Bledsoe with both direct and star in an upcoming film called The In-Between. This movie will be centered on two friends, Mads and…
Note: The author does hold immense compassion for children and teens and their families living with rare disease. Compassion is empathetic in sorrow, rather than wishing there is no sorrow,…
According to a story from marieclaire.co.uk, Vanessa Potter, a TV producer, suddenly woke up one morning to realize that her eyesight was rapidly failing. That morning, her mind felt fogged…
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