Patient Worthy's very own Angie Randall, a mom, wife and friend with multiple sclerosis is walking to end MS. On Sunday, April 30th, 2017 at 10:45 am, at Soldier Field…
Genetic testing for rare diseases such as spinal muscular atrophy (SMA) before you conceive can be an important step in starting or building a family. It can be vital to…
Researchers at Massachusetts General Hospital (MGH) have found that mice with MC1R, the gene that is responsible for red hair, are more susceptible to toxins that are damaging to neurons…
During Rare Disease Week on Capital Hill, on behalf of Lyme and dysautonomia, in addition to ALL rare disease, I lobbied my congressman to support the newly introduced (kind of) OPEN…
We are back from Rare Disease Week in Washington, DC! And do we have some highlights for you below?! Rare Disease Day at NIH was not only informative, but encouraging.…
As Erica Zahn wrote back in February, MGFA's National Conference in New Orleans, LA offers patients and families the chance to hear the latest news, research and treatments for myasthenia gravis.…
Al navegar a través de Tumblr o leer tweets, se ha preguntado alguna vez, "¿Qué es un spoonie?" Es el momento de averiguarlo. En primer lugar, un spoonie es…
“Sound Bites, An Evening of Food, Wine and Music” is TONIGHT! The event is at the National Press Club in Washington, DC. It begins at 6:00 pm with appetizers and wine…
Los médicos no siempre saben mejor. Eso es algo que cada padre cuyo hijo tiene una, enfermedad crónica rara entiende. Estos padres que aparecen en raras Conectar finalmente tuvieron un…
During Rare Disease Week, I have met the most amazing patients and advocates whose personal experiences have kept me motivated to continue spreading awareness not just for my disease, but…
With the new administration, questions of coverage, the ACA and how it effects those of us affected by rare disease have been causing major concern. Today at the 2017 Legislative…
Last night, I attended a documentary screening of "Up For Air" in Washington, DC for Rare Disease Week (or #RareDC2017, #RareDiseaseDay). It follows 53-year-old Jerry Cahill over the course of…
The All of Us Research Program (The Program) at NIH is AWESOME. Here's what I learned at Rare Disease Day at NIH (#RDDNIH) and what you should know too, so…
At #RDDNIH, or Rare Disease Day at NIH, I was definitely troubled by a world map presented, that displayed emerging infectious diseases by region. Let's unpack this a little bit...…
If there is one thing clear at #RDDNIH, or Rare Disease Day at NIH, it's that there are amazing, brilliant people working hard for our community. The rare disease community…
Get informed and gear up for Rare Disease Week this Monday! Start with our Editor's Choice. This week we have a sweet story about a pup and how he helps…
The Cystinosis Research Foundation is the largest provider of grants for cystinosis research. When we say largest we don't mean in the country, we mean in the world. In fact,…
The Endocrine Society's Endo 2017 is the world's largest endocrine science presentation. Attendees will be able to network, learn about the newest product and technology updates, listen to thought-leaders, and…
The Muscular Dystrophy Association's Scientific Conference Registration closes February 28th! This event brings all the important players together in the Muscular Dystrophy world to promote research around management, treatment and…
I love sushi. I also love travelling to hot places who typically serve fish with higher instances of mercury. While I've always been aware that if you're trying to get…
If you are suffering from or caring for someone with Hemophilia B, then this event is for you. The 11th Annual Hemophilia B Symposium When: Fri, Mar 31, 20177:00am and Sun, Apr…
In college, everyone loved the "Fall back" night of Daylight Savings Time. We got an extra hour of sleep and it was much needed considering we were likely celebrating Halloween the night…
Those of us with rare diseases like behcet's and fibromyalgia, that cause great pain, can often get frustrated and irritable because we try everything, do everything right, and yet we are still…
Welcome back to Editor's Choice Patient Worthians! This week, a PW Contributor told a love story about how her husband's bipolar disorder helps her manage her rare disease. We also have an…
From the perspective of a mother with a child who has a serious and rare medical condition, Pfeiffer syndrome. There are many reasons why the term “special needs” can have…
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