Just days after my CVID diagnosis, I was invited to a support dinner. It was at this support dinner that I became aware of how unique my situation was; I…
My name is Lindsay Fogarty. I am a 25-year-old single mother to a wonderful 6, almost 7-year-old son, named Andrew. As I am writing this I am listening to the…
That title. How can blessing and POTS even coexist in the same sentence? Well, my journey started in 2000 when I began noticing strange things happening in my body: intense…
I have Gaucher disease. I often wonder what it would be like to not have this disease. But then I stop and redirect my thoughts. I’ve spent too much time in the…
Happy Friday, everyone! We're trying something new this week. Instead of wrapping up with an Editor's Choice article, we're highlighting four FDA announcements we think you should know. Check them…
The United States Food and Drug Administration has awarded twelve research grants worth a total of over $18 million for research into rare diseases. For more information about this news,…
Attitude as defined in the dictionary: “A settled way of thinking or feeling about someone or something, typically one that is reflected in a person’s behavior.” In my opinion, how…
Happy Friday! As the week comes to a close, we want to spotlight four articles. We have advice from a patient with CVID who learned how to manage her condition…
Three large black and white beasts rest under a shade tree to avoid the sun’s hot rays. They appear to be chewing gum, although they are really chewing their cud.…
The United States Food and Drug Administration has awarded Fast Track Designation to the investigational drug miransertib (ARQ 092), which is being researched as a potential treatment for PIK3CA-related overgrowth…
Happy Friday! While the weather this week has been tumultuous, treatment news offers hope to the rare community. This week, we have an announcement about a Scleroderma registry, and PKU…
I’m writing this article now because it was something that I needed one year ago and didn’t have. I didn’t know anyone who had moved abroad with Common Variable Immunodeficiency…
I know that it's been months since Kylie Jenner tweeted that Snapchat was over, and the company stock dropped like a billion dollars over night, but if you, like me,…
McMaster University researchers investigating the factors underlying patient relapse in acute myeloid leukaemia believe that they may have found a type of cell that plays an important role. The researchers…
Content Warning: This article discusses sensitive topics of mental illness and suicide as it relates to rare and chronic illness. There's no easy way to talk about suicide. This article…
Happy Friday Everyone! As we get ready for the weekend, we want to spotlight four articles. We have an article about a man with Parkinson's who uses social media to…
It was a spring day in 2001. My wife Gina was asked if she wanted to go for a quick ride on our friends new motorcycle. It would change our…
Researchers from the University of British Columbia have developed a new genetic model of Parkinson’s disease that is able to model the early changes in synaptic activity associated with the…
TMI Alert! Pooping, or lack thereof, deserves its own book. Constipation. Hemorrhoids. Ugh! Nothing helped. Over the counter remedies, enemas, plenty of fluids, a diet high in fiber. I tried…
Despite my misfortune, I still live life to the fullest I can. At three years of age, I was diagnosed with a rare disease, which initially had little impact on…
Happy Last Day of August! As we get ready for the autumn, we want to highlight four articles. We have an article about the Zebra Ball fundraising for EDS advocacy,…
Happy Last Day of August! As we get ready for the autumn, we want to highlight four articles. We have an article about the Zebra Ball fundraising for EDS advocacy,…
Hello there! My name is Amy. My friends call me Miss Amy. I’m 42 years old and I have a 21-year-old son who also shares the same diagnosis as me.…
On August 4th, the Ehlers-Danlos Society led the Zebra Strong Rally, which concluded the third day of the Ehlers-Danlos Syndrome Learning Conference in Baltimore, Maryland. Advocating for Ehlers-Danlos Syndrome The…
I came into the hospital about four days ago at 6 am in extreme abdominal pain. I remember writhing on the emergency room bed and breathing so frantically that my…
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