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…
In collaboration with the Hereditary Neuropathy Foundation (HNF), Patient Worthy asked members of the Charcot-Marie Tooth (CMT) community to tell us their stories, in hopes of inspiring everyone in the rare community…
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…
Orkambi (ivacaftor/lumacaftor) is the second precision medicine to be licensed for use in the UK by people with cystic fibrosis. The catch? It is not currently provided by the National…
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