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Growing up, Priscilla Veneklause watched as her father struggled to manage his rare genetic disorder: adrenoleukodystrophy (ALD). Unfortunately, her father lost his fight with ALD when Priscilla was still…
Wendy Borsari is not just a patient living with hypertrophic cardiomyopathy (HCM); she is also a mother, a fierce advocate, and part of the patient advocacy team at Tenaya Therapeutics,…
When the COVID-19 pandemic swept the world, nobody knew what the short- or long-term effects would be. Now, a few years into the pandemic, we’ve begun understanding some of…
In May 2016, I was diagnosed with a rare genetic neurological disease called adrenoleukodystrophy (ALD). Sadly, it's incurable and there's no medication to ease my condition. Since then, my life…
When Jordan Lambropoulos was younger, she seemed to always be ill. She struggles to remember a time in her childhood where she would characterize herself as “healthy.” Even doctors…
A new awareness campaign called RKD & Me has recently kicked off with the goal of spreading awareness of rare kidney disease (RKD). The project is a collaboration between the…
“I spent the majority of my life fearing the weight of VHL will eventually crush me, but thanks to this drug trial, not only do the rest of my fellow…
Parents and doctors were concerned about Chuck Goodman's health from an early age. In fact, they thought he had a deadly case of childhood leukemia. At around age five, Chuck…
Unfortunately, life has not always been kind to Zahid Bashir and Sobia Qureshi. The couple lost two children to Pompe disease, a rare genetic disease caused by GAA gene mutations.…
At 45 years old, Tiffany Wedekind has embodied a sense of gratitude. Each day, she wakes up happy to be alive – and aims to bring that happiness to others.…
In 2002, three-year-old Collin Johnson underwent a tonsillectomy. Just a couple of days later, after Collin woke up from a nap, Stormy noticed a large pool of blood on the…
Real World Evidence Note: This story was originally published by our partner organization TREND Community. You can check out the original publication here. When I was nine years old, I…
In May 2022, 14-year-old Clara Motschenbacher and her family received frightening news. The teenager had Hodgkin’s lymphoma, a rare cancer that affects the lymphatic system. But according to Valley News…
Before you read on, make sure to check out Part 1 of our interview where we discuss what SLC6A1 is and Aubrey's diagnostic journey. Today, we'll be discussing what it's like to…
When Erika Vandenberg learned that her daughter Aubrey had a rare genetic disorder called SLC6A1, her first two reactions were fear and relief. Relief because they finally had a name…
By Randall and Emma Barker Randall and Emma Barker have the unique experience of being a father and daughter both navigating life with Type 1 diabetes (T1D). With over two…
Atlanta, Georgia’s Linseigh Green received a diagnosis of necrotizing enterocolitis (NEC) when she was born. She was sent to the hospital’s NICU only two weeks after her birth. Linseigh’s…
According to a story from mirror.co.uk, Emma Timofte, age six, was diagnosed with a rare disease called incontinentia pigmenti. The diagnosis came when she was only a few weeks old.…
In 2005, The Chronicles of Narnia: The Lion, the Witch, and the Wardrobe brought us into the fantastical world of Narnia. Much like in the novels, the film's stars journeyed to…
Before you read on, make sure to check out Part 1 of our interview, where Annie, Peter, and Patterson discuss what recessive dystrophic epidermolysis bullosa (RDEB) is, Patterson's diagnostic journey, and how…
Annie and Peter McKenzie describe their seven-year-old son Patterson as having a “heart of gold.” Patterson is bright, funny, happy, and empathetic. Despite his insistence that he is not a…
Before you read further, make sure to check out Part 1 of our interview, where Brittany discusses what non-small cell lung cancer (NSCLC) is, her diagnostic journey, and how she learned that…
Since her son Tobias was born, Sophia Rincon has had to embrace her new role as medical mom. According to an article in KENS5, Tobias was born with congenital diaphragmatic…
On the one-year anniversary of her RET+ non-small cell lung cancer (NSCLC) diagnosis, 37-year-old Brittany Hawkins had spent some time reflecting on her journey. When she was just seventeen years…
Before you read on, don't forget to check out Part 1 of our interview with Jennifer Wallace Valdes, PT. In Part 1, Jennifer discusses her background, what Duchenne muscular dystrophy (DMD) is,…
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