A Futurism article this week put into very human terms the ongoing question we face when it comes to rare disease treatment and Pharma: What is the cost of life?…
Sometimes patients receive the hard-hitting news of short life expectancies. What happens when a doctor tells you you won't make it to adulthood? What becomes your life priority? Sometimes, however,…
A new book was just released called “Nasty Women: Feminism, Resistance, and Revolution in Trump’s America,” a collection of essay's written by empowered women speaking out against life in Trumpland.…
I love Thanksgiving! It's a great time to catch up with friends and family. The one drawback is my diet is strictly controlled due to my rare disease, so at…
Come to the 31st Annual NACFC and be among 5,000 attendees, exhibitors, supporters, and staff from around the globe to learn more and talk about everything cystic fibrosis! Find out your registration fees…
Come explore Colorado while attending the annual and internationally recognized forum for training and education for Huntington disease researchers!
An ongoing clinical trial called ARROW is making advances in the treatment of people with relapsed and refractory multiple myeloma. Patients who took a dose of a drug called Kyprolis (carfilzomib)…
A recent study, published in the Journal of Neurology, Neuroscience & Psychiatry, suggests that diets heavy in fat can increase the risk of relapse in children with multiple sclerosis (MS).…
As seen by her story on IDF's website, for Kayla Kuehl, her diagnosis of an extremely rare disease happened over the course of several years. It's called Common Variable Immune Deficiency…
When is acromegaly like a scene from a movie? I know it's a stretch, but bear with me. I rarely go to the movies, you know, in a movie theater.…
ROME! Come and experience beautiful Rome as well as stimulate the exchange of ideas, form new collaborations among investigators and clinicians with different expertise, spark interest in these complex diseases among postdoctoral research…
Knowing you’re not alone and connecting with others who share the same experience with Dravet syndrome can be incredibly valuable. Parenting a child with such a specific set of symptoms…
Rare Disease family members often hear, “I don't know how you do it.” This remark usually refers to the physical and emotional aspects of the condition, but those who make…
Having a peanut allergy is nothing to sneeze at. If you are a parent with a child who has a peanut allergy, you need to be constantly vigilant. Now, a…
Popular wisdom tells us that the first step to fixing a problem is admitting that you have a problem. This works for individuals, like alcoholics, thanks to William Griffith Wilson,…
Happy Pre-Halloween Patient Worthians! October is Dwarfism Awareness Month. Not only that, MDS World Awareness Day was just two days ago! Get the deets below. We also have a story…
Vegan, gluten-free, dairy-free. Three symbols and phrases I constantly look for in food. I have to. Having chronic illness and rare disease has a tremendous impact on my digestion. Not…
All a Hollywood star needs to do is be seen with a designer outfit, bag, or shoes and that company can be propelled from anonymity into the white, hot spotlight.…
It all started when 12-year-old Mia Trease started having knee pains during a summer of softball. The phone call with the bad news couldn't have come at a worse time.…
Nine-year-old Giovanni Hamilton is a victim to one of the rarest diseases in the world but he won't let it define him. The rare condition is called Schwartz-Jampel syndrome (SJS)…
Ten-year-old Coleman Walsh always wanted to be a professional hockey player and now his dream has come true. According to the Daily Mail, he just signed with the Massachusettss's Babson…
What happens when you’re not the cancer that everyone is talking about? Funding, research, and headlines can often be noticeably lacking when you’re just a run-of-the-mill, life-threatening gene mutation, according…
It's been a great year for the Los Angeles Dodgers. Their loyal fans are eagerly awaiting their first World Series play in 29 years on October 24th. One loyal Dodgers…
When I was 16 years old, I was uber-concerned about boys, prom, my pin-straight hair, boys, and how much gas I had in my car. But for 16-year-old Alexis Mae…
There's an app for everything right? It seems like every day a new app is being created to make life easier, for better or for worse. In the case of…
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