Pictured: Dr. Jakub Tolar EB can make a lot of daily activities difficult and painful. Check out some tips and tricks compiled from presentations at the 2016 Debra CARE Conference.…
Finding the money to fund research and the development of treatment (and maybe even a cure) for most rare diseases is difficult for a couple reasons. Rare diseases are notoriously hard…
Cuando se tiene una enfermedad rara como la enfermedad granulomatosa crónica (EGC) y has pasado la mayor parte de tu vida siendo pinchado y cortado por los (esperemos) médicos bien…
Okay, here's what's terrifying to me—the fact that there are SO many rare diseases out there and science hasn't even begun to skim the surface of knowing how and when…
In a nutshell... Amyloidosis is a rare blood disorder that occurs when a person's bone marrow makes too much of a protein called "amyloid," which then collects in the body's…
This goes for peers and physicians alike, chances are if you are uncertain about some aspect of an illness the patients themselves can fill you in. Patients do so much…
Von Willibrand Disease (VWD) is a bleeding disorder, not unlike hemophilia A and hemophilia B. But don't be fooled. It's very different. It's also the most common bleeding disorder on…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page then…
Ahora en su quinto año, un equipo de ciclistas altamente motivados de Sandpoint ha pedaleado una vez más unos 3.000 millas arduas través de los Estados Unidos, participando en la…
Patient Worthy had the privilege of speaking with Vicky, who shared her story of being diagnosed and living with sarcoidosis. My case was outside the ‘normal’ perimeters because I was…
If you have a rare disease, you probably have days when you think: "I wish I had someone to talk to or email back-and-forth with... someone who understands exactly how I…
Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff, making it harder for a person to breathe and preventing the lungs from properly…
It's easy to identify the times when a medical condition works against us. In the case of acromegaly, people may experience: fatigue, muscle weakness, severe pain, limited mobility, impaired vision,…
It’s always awesome to announce a new clinical trial, especially for something that could offer relief to people suffering from the rarest of the rare conditions. And rare doesn’t begin…
Si su médico le ha dicho que se podía comer pizza, carne y otros alimentos ricos en grasa al día es probable que registrarse para que la prescripción inmediatamente. Pero…
"From belonging to an healthiest elite organisation to being hit by a rare disease is a leap which is not easy to accept." What is it about stories? Why do…
How would you feel if someone you love, someone you care about more than anything else in the world, needed brain surgery to remove a tumor and, right as that…
September is IPF Awareness month, I always love seeing the little things you can do to help raise awareness and involve anybody. I wish they could all go viral like…
When you’ve been diagnosed with a rare disease, it’s alarmingly common for your diagnoser to have just as many questions as you do… which is not comforting. Luckily, more resources…
On March 13, 2016, the SunHerald of Gulfport, Mississippi, announced a contest: school choirs could audition to perform with the rock band Foreigner. And in addition to that opportunity, the chosen…
Can I just tell you how I tired I am of all the millennial hate out there? People are beyond harsh to the younger generations, and this article on Heritage High…
Para una enfermedad que tiene tan poca atención prestada a ella, hay un buen número de personas que quieren llevarlo a la vanguardia en la forma de una exposición de…
If you're anything like me, you hate taking medicine, but you know that it's important and necessary to do so when you're living with a chronic illness. However, I'm always…
This September, Chicago is having a Hike for Lung Health to help raise awareness for IPF. If Chicago is to far for you to go to participate then organize a…
When you are diagnosed with a serious chronic illness like glomerulonephritis, you enter into an entirely new world. Suddenly, you’re spending time inside buildings most people never even noticed. Almost…
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