Six weeks after their daughter was born, a young New Zealand couple had their two children taken away by the state (one was a newborn baby) because of what state…
Being a teenager is inherently difficult. There's no real way to make it to your twenties without feeling tired, cranky, and misunderstood by everyone around you. It's even harder when…
A much-lauded piece of wisdom in engineering is that “failures teach more than successes.” While this might seem to contradict itself, I ask you to think back to your own…
The close knit Algiers community in New Orleans united together once again for a charity walk to raise awareness and money for Stevens-Johnson Syndrome (SJS). SJS is a highly rare…
Welcome Back Patient Worthians! This week, we have stories of brave patients and caregivers who run, march, and make innovative steps to reach recovery. A young girl marches after her…
Our gut bacteria may be responsible for antiphospholipid syndrome (APS). What do you need to know about the ordinary gut bacteria known as commensals, and APS? Keep reading, or view…
In Tecoman, Colima, western Mexico, Luis Manuel is now a ten month old baby, but he weighs as much as a nine-year-old. Luis Manuel tops the scales at 66 pounds,…
Fourteen years ago, Sabrina "Bria" Baumann's mother, Sophia, saw a mass growing in a sonogram. Something was wrong. Whatever was growing was on her chest and her neck, and the…
In celebration of her final 18th round of chemo, a brave 12-year-old girl was given a guard of honor march along the halls of the hospital. Her name is Alice…
Sandra De Santos has thousands of bubble-like tumors on her body due to a rare disease called neurofibromatosis type-1. It's a hard life, but she has spoken out proudly about…
This isn't the first time Barry Dubois, host of the Australian cooking show, Living Room, has had cancer. Seven years ago, he was diagnosed with plasmacytoma myeloma. It was different the first…
I want to be Isaiah Acosta when I grow up. The 17 year-old from Phoenix, Arizona was born without a jaw, due to the very rare disease situs inversus, which…
Happy Friday Patient Worthians! Gotta love that hectic-catch-up-crazy feeling post-Thanksgiving and pre-December holidays! We have heartwarming story of a little girl getting the ultimate gift for the holidays. We also…
Some people with Marfan syndrome look the part. They may be unusually flexible, with long arms, legs, and fingers, and a tall, willowy build. Some patients have scoliosis, crowded teeth,…
Glenda Thompson is a proud grandmother who will stop at nothing to ensure her grandson lives a comfortable life. 4-year-old Cole Thompson is suffering from a rare genetic disorder called…
Shani Dhanda, 31, was at a loss-- she had sent hundreds and hundreds of job applications, and no one even interviewed her. The Birmingham woman stands at 3'10". She was…
While President Trump hopes to overhaul tax credits, Arkansas patient advocate Andrea Taylor is trying to rescue a tax credit that benefits the rare disease community. Taylor's 9-year-old son, Aiden,…
As the United States Senate gears up to vote on whether to pass their version of the Republican-crafted tax reform legislation (the House of Representatives has already passed their version),…
This past July, professionals, patients, and families with loved ones who struggle with primary hyperoxaluria Type 1, 2 and 3 were offered a glimpse of hope and a better future.…
From paintings and statues to circus advertising and reality TV, the last few centuries of art has not always favored people with achondroplasia. Although some of the earliest pieces of…
Reported cases of achalasia are up in the United Arabic Emirates (UAE), a country along the Persian Gulf. This increase has caused concern among health officials, according to an online…
Progeria is an incredibly rare genetic condition, where a random mutation causes a person to age rapidly. Progeria patients are essentially young people in the body of someone much older.…
You're familiar with the formula of the rom-com: Boy meets girl, girl falls in love boy, boy faces obstacle, girl almost loses boy - but eventually big kiss and happily…
For those people struggling with GNE myopathy, there is someone who wants to hear from you. Whether you’re a patient or a loved one of someone with this rare disease,…
Advocates for people with rare diseases such as hypophosphatasia (HPP) are changing the world. Moms and dads, aunts and uncles, brothers, sisters, cousins, spouses and friends play a tremendous role…
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