Exercising with Ehlers-Danlos syndrome (EDS) is complicated. On one hand, you have to do it: exercise is the best treatment people with EDS have for an otherwise untreatable condition. On…
This year’s typical holiday dinner will tip the scales at more than 3,000 calories. With appetizers and a drink or two, you’re looking at more than 4,500 calories—for one meal.…
Lots of people with both rare and more prevalent diseases are helped by animals, but the terms service animal, emotional support animal, and therapy animal are often misunderstood, and many…
Adult Growth Hormone Deficiency (AGHD) is a rare condition when your body produces less growth hormone (GH) than normal for your age and sex. AGHD may affect your body systems,…
If you think you have to be middle-aged or older to check your cholesterol, think again. Laura Livesey is a relatively young blogger (you can check out her blog, Confidence…
September is Krabbe Disease Awareness Month! Because a lot of times, these rare diseases are rarely talked about, it'll be useful to deep dive into the disease to learn more…
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…
Elmo and friends are here to help! - thanks to the good people of The National Association of Community Health Centers (NACHC)! For those who have never heard of the NACHC,…
Ehlers-Danlos syndromes (EDS) are a group of rare conditions that affect the connective tissue and can be inherited. Connective tissue lies between tissues and organs throughout the body and helps…
Hemophilia can affect anyone. Let’s make a few things clear: Women are carriers of hemophilia and pass the gene, but men determine the child’s gender. It’s not all on you,…
1. Start planning your fundraiser early. Logistics take time. 2. Know your audience. There are a million good causes in the world to donate to. You have to know who…
The information in this article is based on the HAE UK and the US Hereditary Angioedema Association websites. Hereditary angioedema (HAE) is a condition that affects about one in every…
Last week Patient Worthy attended ALD Life’s Community Weekend 2018, where Anne and Joel Buckland from the marketing agency We Do Stories talked about how to bring attention to rare…
A young woman in Cambridgeshire received a trailblazing double lung transplant. Now she’s started a Kickstarter campaign to publish a book to help other people in similar situations, their friends…
The country singer, songwriter Gavin DeGraw has released a video to raise awareness for pancreatic cancer as part of an on-going campaign by the Lustgarten Foundation, reports PR Newswire. In…
I lived with Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder, my whole life and had no idea until I was 21. The symptoms were all so random, separate, and…
Following Rare Disease Day at the NIH Clinical Center in early March, we spoke to the NIH about remaining questions we had pertaining to rare disease research. We are impressed with…
In the beginning of March, Patient Worthy joined many other groups from the rare disease community for Rare Disease Day at the NIH Clinical Center, an event which you can…
Much has been said about the way in which social media is affecting society today. Recently, many of the remarks have been negative. Yes, it has been used by some…
Dave Fuehrer, a competitive bodybuilder, was diagnosed twice with testicular cancer, reports PM 360 Online. He expressed that the second diagnosis was so much harder, as he was recently married…
United in Progress is the tag line for a unique collaborative effort to speed progress in identifying, understanding and treating hemophilia: My Life Our Future. Increasingly in the area of rare…
As an official Friend of Rare Disease Week, we are highlighting some of our heroes and rare disease warriors' stories. Below was submitted by the ADNP Kids Research Foundation and…
These days it’s difficult to walk through a public gathering and not see a "Keep Calm and Carry On" T-shirt, poster, coffee mug, or bumper sticker. As a catchphrase originally…
February is Turner Syndrome awareness month! Turner Syndrome is a chromosomal condition that affects approximately one in every 2,000 women. The condition occurs when a woman lacks all or part…
According to an announcement from The Amyloidosis Research Consortium (ARC), the organization has launched version two of the My Amyloidosis Pathfinder (MAP) tool. The tool was developed as a way for…
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