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…
According to a story from STV News, Aaron Hunter, who is nine years old and was born with the rare condition ROHHAD, recently earned the Good Morning Britain Young Fundraiser…
According to a story from theage.com.au, a remarkable turn of fate would bring together two women who would have otherwise never known each other---and save both of their lives in…
According to a story from Mirror Online, 29 year old Jessica Walton of Cambridgeshire, England, was first diagnosed with the rare disease intracranial hypertension four years ago. Since then, her…
According to a story from abc.net.au, parents Kellee and Jamie Clarkson of Queensland, Australia are calling for the implementation of newborn screening in the state for the rare disorder spinal…
In a story for Hemophilia News Today, author Shellye Horowitz has written a piece titled "An Open Letter to Providers Treating Women with Hemophilia." Women still face discrimination and unequal…
According to a story from abc30.com, Tawny Drain, now 33 years old, was in the sixth grade when she first started having symptoms of a rare illness called Caroli disease.…
According to a story from Nature, Dr. Carlos Heras-Palou was diagnosed with hATTR amyloidosis when he was just 39 years old. Initially, the devastating diagnosis was completely overwhelming, as the disease…
According to a story from the Children's Organ Transplant Association, the Fitzmaurice family of St. Louis, Missouri will have a ton to be thankful for as the holidays roll around…
According to a story from Daily Nation, Beneddettah Wangui of Kenya had been experiencing chronic pain since her teen years when she was finally diagnosed with fibromyalgia in 2012. However,…
According to a story from governmenteuropa.eu, Professor Susanne Kircher, who is associated with the Austrian MPS Society and the Medical University of Vienna, writes about the state of rare diseases…
According to a story from stltoday.com, the Saint Louis Walk for PKD (polycystic kidney disease) took place on Sunday, October 13th, 2019. This event was just one of many that…
According to a story from messenger-inquirer.com, ten year old Abrielle Haynes of Sacramento, CA is often described as a 'china doll' by both family and friends. This is because she…
"It’s like when you suddenly shut off control over your muscles. Your will can’t affect it at all. “I say that I’m a ‘physical schizophrenic,’ and I can only do…
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