Rare disease patients know what it's like to go without a diagnosis despite enduring symptoms. Doctors often don't recognize the disorders for a number of reasons, whether that's the similarity…
A recent article showed how the parents of a little girl with the rare blood disorder Von Willebrand disease are spreading awareness about the importance of donating blood. Von Willebrand…
Just about two years ago, Jane Warrimer began experiencing abnormal menstruation. Her period was no longer regular; her bleeding lasted for weeks at a time. After pursuing an IUD, Jane…
Our parents can be some of our strongest supporters, and Hawken Miller knows this firsthand. He recently published an article in Muscular Dystrophy News Today detailing the love and support…
Seven years ago, at just 15 years old, Lauren Blake was diagnosed with gastroparesis. This condition makes it difficult for Lauren to keep down her meals or, really, to eat…
Julia Lefelar, a resident of Gaithersburg, MD, was telling a friend about her years of seeing different doctors trying to find the cause of her illness. After a while, her…
Oscar Warrent, a toddler from Norwich, England, has been through a lot in his two years of life. About three months ago, he was diagnosed with rhabdomyosarcoma, a rare form…
This week the Guardian reported that a pig’s heart, which was genetically modified, had been transplanted into a patient by doctors who were trying to save his life. The patient was…
On January 12, 2022, posts shared on Facebook and Instagram announced the passing of 15-year-old Adalia Rose Williams. A Youtube and Facebook star, Adalia had over 16 million followers collectively.…
When she was born, Savannha Aretino was diagnosed with hypophosphatasia, a rare genetic disorder characterized by bone and teeth development abnormalities. Now, twenty-three years later, Savannha is working to not…
Catherine Nettles Cutter, a professor at Penn State University, vividly recalls two years of her life spent trying to recover from a bodysurfing accident that resulted in the mysterious loss…
2021 was a hectic, record-breaking, and all around stressful year. Now that it's 2022, I think it's time to start the year with a positive story. According to an article…
Life with a rare disease can be difficult and scary, especially when you can't be sure what the future holds. Jessica Calkins, a 37-year-old mother from Washington, understands this experience…
One 66-year-old patient who lives in Poughkeepsie, N.Y. received the same diagnosis from three doctors. Each doctor suggested that his symptoms pointed to temporomandibular (TMJ) joint pain. The patient and…
After two years of in vitro fertilization treatments, Amber Freed, Age 38, and her husband Mark Freed of Denver, Colorado welcomed their twin babies Riley and Maxwell into the world.…
Victoria Gray’s recent interview with NPR confirmed that her genetically modified blood cells have truly transformed her life. Victoria volunteered in the first-ever attempt in the U.S. to use CRISPR,…
In Part 1 of "With Mais and Mal," Patient Worthy spoke with Mallory Cyr about microvillus inclusion disease (MID), Mallory's story, and the process of becoming an advocate. Today, we…
What does someone with a rare disease look like? With over 7,000 rare diseases in the world, affecting an estimated 300 million people, life with a rare disease (and people…
Written by Lucy Scott The 9th of October 2014 would be a day I would never forget... but in actuality, I don’t remember that day nor the years before. Every…
Geraldine is Senior Vice President of TheGrio’s, known as Black America’s News. Although she never met Virgil Abloh, she followed his career and knew of his many talents. Geraldine says…
Allegra Sturdevant, age 21, averages thousands of views on her TikTok videos, many of which describe her experiences with Marfan syndrome. According to an article in The Daily Universe, the…
Nick Cannon has announced that he will be taking some time off to be with family and mourn after the death of his son, Zen. The sad news was broken…
According to a recent article, a little boy’s parents are bringing awareness to the rare genetic disorder called uncombable hair syndrome after he was diagnosed at just 14 months old.…
According to a recent article, a Vietnam veteran is spreading awareness about the struggles of accessibility for treatments for his rare genetic disease alpha-1 antitrypsin deficiency (A1AD). Alpha-1 Antitrypsin Deficiency…
In 2016, Marley Berthold was born. But doctors, and her parents, noticed some concerning signs. Marley's silver hair had fallen out in clumps; she had macrocephaly (an abnormally large head)…
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