The concept of a “library” is something we probably take for granted—but at its core, the library is one of humanity’s greatest innovations. The act of collecting information for the…
Exciting news for people living with sarcoidosis! Vanderbilt University Medical Center (VUMC) has developed a Sarcoidosis Center of Excellence. Presently, Dr. Wonder Drake is the director of the center. She…
Elly Mayday, model, is teaming up with Adam Lawrence, filmmaker, to spread awareness and support for those affected by ovarian cancer. Elly was diagnosed with stage 3 ovarian cancer just…
Attitude is one of the most important elements of bringing together “who you are” with “what you do.” Attitude may not be everything, but it’s important enough that nothing else…
Type 0 is the worse type of spinal muscular atrophy (SMA). Fetuses that have this severe form of SMA typically die within the womb. A newborn can likely survive up…
Most people diagnosed with ovarian cancer suffer from recurrences after treatment. And every one of them means less and less treatment options. It’s a disheartening, never-ending cycle. What has stumped…
Hannah Hawkins has an autoimmune disorder called transverse myelitis. She has to go to physical therapy multiple times each week to help her walk. Using a crutch is the norm…
At Patient Worthy, we’re all about rare diseases, and the focus of almost all our posts is the patient. Today, I want to shine a bright, white light on all…
Think all those fundraising walks you see advertised don't help? Think again! Shelly Meitzer, the mother of two children with tuberous sclerosis complex (TSC), a rare multi-system genetic disorder, has…
The First Ever Seattle Rare Disease Fair happened on June 3rd, 2017. And it was a BLOOMING success. The goal of the event was to spread awareness of rare disease…
Until recently, the term ROHHAD meant nothing to me. But, then, I heard about an 11-year-old Canadian child named Denika Bailey who has this rare disorder. The letters stand for:…
The United States government has certain diseases that they recommend newborn babies to be checked for and currently, spinal muscular atrophy (SMA) isn't on the list. But--great news!--spinal muscular atrophy is…
Hemiplegia normally occurs during pregnancy, or very quickly after birth. Parents are lucky to get a few moments with their child before this condition changes all of their lives forever.…
I'm sure you've heard about ALS after the "Ice Bucket Challenge" swept the nation in 2014, but few still probably took the time to research and learn more about the…
Want some more news, events and announcements on Fabry disease? We got 'em! [one_half] [/one_half] [one_half_last] This Fabry Disease Treatment Has Had a Rocky Journey Regulatory Pathway Announced…
Imagine sitting down at the table. You put a normal amount of food on your plate and you begin to eat. Then, you take a second helping of everything and…
Welcome to Friday Patient Worthians! This week we have stories on cystinosis and super moms with sickle cell! Additionally, we have a patient story on dystonia and an upcoming event. Lastly, an…
People with Addison's disease often appear just fine on the outside, but on the inside, it's another story. Why? Just above the kidneys are two hormone-producing glands called the adrenal…
New information about rare diseases is always being discovered. As new symptoms are documented from patients and new research is developed, there’s a good amount of data that needs to…
When you hear your newborn's been diagnosed with a rare disease, you may feel like you have to become a scientist in order to raise them. Parenting a child without…
Young adults with spinal muscular atrophy (SMA) have the same interests as those without SMA. You may want to go to college and pursue you dreams. Or you do you…
Want some more news, events and announcements on HAE? We got 'em! [one_half] [/one_half] [one_half_last] Get the Most Updated HAE Treatment Information Treatments Are Available: What Now? New,…
Von Willebrand disease (VWD) is a rare disease that affects up to 1% of the population in the United States. It occurs when the blood is missing an essential protein…
Paige Hildring is nine years old. She’s one of 108 people in the entire world with PURA Syndrome. PURA Syndrome is a neurodevelopmental disorder and those who suffer from it…
Chudley-Rozdilsky-Houston Syndrome (named for the researchers who have studied the syndrome) is thought to be an autosomal recessive trait that causes multiple diseases, including developmental delays. Among the maladies of…
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