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.…
Painters, photographers, sculptors, and visual artists that defy categorization, take note! The EveryLife Foundation for Rare Diseases' Rare Artist Contest is back, for the ninth year in a row. The…
Many individuals living with hemochromatosis can lead normal, healthy lives. Most people living with the condition have the same life expectancy than those without. However, it's important to know some fast…
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…
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 perfectly coifed woman-child cuts you off on the way to the YMCA. Your children are copping some major attitude. Your spouse forgets to grab milk for dinner. Do you…
If you or someone you love has Cushing Disease (often confused with the umbrella term, Cushing Syndrome), you've probably heard about microadenas. Microadenas are the tiny, benign tumors that develop…
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.…
New findings are coming from a recent study led by researchers at the Journal of the American Medical Association (JAMA) that could have long-term implications for Zika Virus research. Evidence showed that…
There is support out there for people living with and/or affected by Waldenstrom macroglobulinemia (WM). Thankfully, according to Patient Worthy Partner International Waldenstrom’s Macroglobulinemia Foundation (IWMF,) a gap may be bridged…
Health scientists at the University of Leicester and University of Nottingham have heralded the discovery of a gene associated with lung fibrosis, such as idiopathic pulmonary fibrosis (IPF), as "a…
Presage Biosciences will be receiving its first grant from The Mark Foundation for Cancer Research, a brand new nonprofit organization. Presage developed something called CIVO, which is a drug-development platform.…
It's not every day that you hear about how nicotine may help lung disease. However, researchers at The Ohio State Wexner Medical Center are asking this question. They're testing whether…
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…
I know many people who would love to go to a local support group, but there either isn’t one in your area or you are not well enough to attend.…
What can one little boy and his family do to fight a rapidly debilitating and (currently) incurable disease such as Duchenne muscular dystrophy? A lot. The diagnosis of a loved…
We constantly hear about cancer deaths, but every once and a while, we hear the rare cases of cancer survivors. Linda VanDershaaf is one such survivor and today she is…
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…
According to a press release put out by PTC Therapeutics, Inc., the Office of Drug Evaluation of the Food and Drug Administration on Wednesday, Oct. 25th, 2017, sent a complete…
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,…
Alkaptonuria, a rare genetic metabolic disorder resulting from excess homogentisic acid in the body, affects all kinds of people, though symptoms tend to become more severe in males. Symptoms include:…
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…
The FDA this week granted orphan drug designation to glepaglutide for the treatment of short bowel syndrome (SBS), developed by Zealand Pharma A/S. SBS is a rare disorder where an…
Earlier this month, PBS released the "The Gene Doctors." The hour-long documentary follows the recent emergence of gene therapy as a novel method of treating rare diseases. The film discusses…
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…
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