Everybody responds to treatments differently. The drug, diet, or surgery that successfully helps one person, may have a neutral or even negative effect on another. This is why the medical…
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.…
My son Nick has a rare, debilitating, life threatening disease called Lennox-Gastaut Syndrome (LGS). To learn more about LGS, click here. For over 38 years I have been consciously aware…
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…
16-year-old Holly LaPrade found her muscle and tendons slowly turning into bone because of a rare disease she had no control over, a news that sent a crushing blow to…
Trigeminal neuralgia (TN) is the type of disease you wouldn't wish on anyone. It's characterized by extreme pain in the trigeminal nerve, which innervates the face. It's often described as…
The fate of newborn screening for Pompe disease and MPS-1 throughout the state of VA will be determined next week. The VA Newborn Screening Advisory Committee meeting will take place…
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.…
The Green family is trying to raise money for their daughter's life-saving surgery and it's now becoming a race against the clock. 18-year-old Ylena Green is suffering from Ehlers-Danlos Syndrome,…
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…
Whenever I'm under a lot of pressure, I daydream about a day off, where I could watch true crime shows, eat pizza in bed, and never get out of my…
Crohn’s disease may affect as many as 1.6 million Americans, according to the Crohn's & Colitis Foundation (CCF). Although it can strike at any age, Crohn's is more prevalent among…
When you have a rare disease like Friedreich ataxia (FA), which affects only 50,000 people in the United States, it is pretty easy to feel alone and isolated. Usually, the…
Since the birth of industrialization, societies have wrestled with the effects of pollution. Whether it contaminates the air, water, or soil, it can negatively impact human health, and scientists are…
Helen Edgar, 41, was diagnosed with a rare disease that doctors failed to catch soon enough before her unexpected death. Her family won a settlement of £415,000 in High Court.…
Layne Rodgers is a longtime Astros fan. When he went to the World Series to see his favorite team, he had no way of predicting what would happen next. Just…
Do you love cheese? Have an irrational fear of cats? Are able to wiggle your nose? As humans, we share more than a few surface-level characteristics with the common house…
Jessica Brown is gearing up to turn 11 years old on December 20th, and her mother, Jemma, is urging people to show her some birthday love. Jessica suffers from neurofibromatosis,…
Tourette syndrome (TS) is a rare, and widely misunderstood neurological condition. It causes involuntary vocalizations or movements, which are called tics. This can appear in many forms: repetitive throat clearing…
Allan-Herndon-Dudley Syndrome can be incredibly tricky to treat, due to the blood brain barrier. New research may change the equation and eventually lead to treatment. Read the original story at Science…
Alex Pasichnyk is a 12-year-old girl from Canada, who enjoys playing piano and swimming. Last June, her life was suddenly interrupted by a rare disease. Alex has to leave her…
Happy Thanksgiving Patient Worthians! While you're still digesting, take a look at what we have in store for you this week. If you have EDS, we have some exercise tips…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
