A new Brazilian study indicates that Zika is hitting especially hard for lower-income groups, with infection rates exceeding 60%. Zika is, of course, the virus that spread rampantly a few…
Back in 2014, the FDA gave the green light for eight brand new drugs for orphan diseases. Among the pack was BioMarin Pharmaceutical's very own VimiZim. Weird name right? Well,…
We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…
If you have a rare disease, chances are, sometimes you feel all alone in your experience. When you look around, there are people all over the world fighting similar battles.…
Great news for the rare disease community! Ultragenyx Pharmaceuticals reported back positive results from its phase 3 study of the treatment drug burosumab in adults with X-linked hypophosphatemia (XLH). XLH…
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…
The highly anticipated Season 2 of "The Crown" hit Netflix today and with it, a new chapter of political intrigue, elegant royalty and... a drug addicted JFK? Say what? It's…
The story starts with Cheryl and Sharik Peck, a couple in Richmond, Virginia. It was an oddly convenient pairing: Cheryl dealt with chronic pain, and Sharik, a physical therapist, worked…
Although Anabelle, a girl from the Phillipnes, is only seven, she has seen some of darker corners of the world. Just two years ago, she was held captive by a…
Nerves were high last week as the Senate geared up to vote on the bill to overhaul the U.S. tax code. Members of the rare disease community felt particularly vulnerable,…
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…
Good news for patients with Mucopolysaccharidosis Type VII (MPS VII)! In mid-November, the FDA approved a new drug for treatment of this rare disorder. The drug can be used for…
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),…
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…
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…
Reverend Jesse Jackson has been a guiding force in Civil Rights activism for over 50 years. He's a man of many facets: a baptist minister, presidential candidate, powerful orator, and…
Happy Friday Before Thanksgiving! As you prep your tummies for the feast next week, take a dive into some of our top stories this week. There is an article honoring…
According to a new study, getting tested for Zika once is not enough. A second procedure may be needed to avoid giving birth to a child with defects. We all…
When Anthony Byrd's son, Xavier, was born, something didn't feel right. A closer look at Xaier's face using a heat lamp revealed that something was indeed not right. Following that,…
Can increasing awareness and early screenings have an impact on heart health in Canada? When it comes to familial hypercholesterolemia (FH), Vancouver’s top medical advisors believe it can, according to…
We're in a tumultuous time for Duchenne muscular dystrophy (DMD) treatment. Recently, the DMD community was outraged when the FDA rejected ataluren (Translarna), a promising new drug, for a disease…
Happy Friday! We have an FDA approval this week for rare cancer patients! We also have the details on a hypophosphatasia fundraiser. There's also an inspiring story of of a…
Gatorade and other sports drink commercials often feature super athletes pushing themselves to the point of exhaustion, taking a swig from a sports drink, and then rallying to set new…
The FDA makes decisions that determine the lives and treatments of patients with rare diseases. Many of these people who make these decisions aren't impacted by the disease in their…
In an article by Wendy Henderson on sclerodermanews.com, joint stiffness, arthritis, joint contractures, tendon pain, and nerve pain are the most common causes of pain for people living with scleroderma. The…
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