Meme: You’ve Got This
Everyone has bad days, but don't think for a second that you can't handle this. The chronic life is rough but you're stronger than you know!
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Meme: You’ve Got This
- Rare Disease News
See How These Brothers Honor Their Father
It's never easy to lose someone you care about to IPF. It can help, though, to not just mourn their loss, but to celebrate their life. When Irv Feldman passed…
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See How These Brothers Honor Their Father
3 Exercises to Help You If You Have AS
Props to medical professionals who make the effort to be approachable—and sometimes entertaining. A lot of us appreciate your efforts—even when they just come off as awkward. These two physical…
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3 Exercises to Help You If You Have AS
How To Know If It’s IPF or Just Getting Old
How many things do people dismiss in daily life as just a sign of getting older? Too many, in my opinion. But in this article, The New York Times seems…
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How To Know If It’s IPF or Just Getting Old
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Curious About Eating with ITP? You’re Not Alone in the World
Idiopathic thrombocytopenic purpura (ITP) is a rare immune disorder that can cause bleeding (from an insufficient platelet count) or bruising because the body is destroying the patient's blood platelets. Normally,…
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Curious About Eating with ITP? You’re Not Alone in the World
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What Do You Know About SUPER Rare Diseases Like This One?
If you have a disease known as Pyrin Associated Autoinflammation with Neurtrophilic Dermatosis (PAAND), you're in luck! Your tongue isn't, though, because that's a TWISTER! Fun fact: It's caused by…
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What Do You Know About SUPER Rare Diseases Like This One?
The Remarkable Results of Homeopathy for Anklyosing Spondylitis
When you have a chronic illness like ankylosing spondylitis (AS), you get used to taking a lot of pills. And I mean A LOT. You take pills for the pain.…
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The Remarkable Results of Homeopathy for Anklyosing Spondylitis
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How Will New Treatment Make Life With IPF a Little Easier?
What does pulmonary fibrosis, or scarring of the lungs, have to do with blood? Probably more than I'm aware, because when I first saw that a biopharma company specializing in…
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How Will New Treatment Make Life With IPF a Little Easier?
5 síntomas que te harán pensar que tienes espondilitis anquilosante
Para aquellos que han sido diagnosticados con una enfermedad crónica, usted sabe que puede ser bastante el proceso. Y la espondilitis anquilosante (EA) no es una excepción, sobre todo porque…
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5 síntomas que te harán pensar que tienes espondilitis anquilosante
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Do You Ever Wonder What’s Happening Down Under?
Pompe disease is one of those rare disorders that progresses steadily over the course of a person's life. Patients are lacking the enzyme that breaks down glycogen, and the build-up of…
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Do You Ever Wonder What’s Happening Down Under?
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What Parents-to-Be Need to Know About Genetic Testing and Race
Race and ethnicity is a touchy subject—and rightfully so—but that doesn’t mean it shouldn’t be discussed, especially in terms of healthcare. The fact is, certain genetic diseases pop up in…
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What Parents-to-Be Need to Know About Genetic Testing and Race
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You’ll be Astonished to Know Things Are Looking Up for Pompe
Pompe disease an inherited neuromuscular disorder that is caused by certain gene mutations, particularly in the gene that makes acid alpha-glucosidase (GAA). In Pompe's most severe form, it's often fatal because…
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You’ll be Astonished to Know Things Are Looking Up for Pompe
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Hemophilia: When Bad Viruses Do Good Things
A cure may be just around the corner for people who have hemophilia B. And anytime the word "cure" appears in a sentence with a disease state, there's cause for…
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Hemophilia: When Bad Viruses Do Good Things
una visita al quiropráctico para mi espondilitis anquilosante!?
No puedo decirle cuántas conversaciones que he escuchado entre alguien vivir con una enfermedad crónica y un escéptico que simplemente está desconcertado por lo que están escuchando. Para muchos en…
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una visita al quiropráctico para mi espondilitis anquilosante!?
Editor’s Choice: An Amazing Mom with MS & a Young Woman with Wilson’s
Welcome to this week's Editor's Choice! This week we are highlighting this inspirational, beautiful mother who wants to spread her message. She's currently battling multiple sclerosis in a courageous and proactive way,…
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Editor’s Choice: An Amazing Mom with MS & a Young Woman with Wilson’s
Meme: Keep Looking Up!
Take Snoopy's advice, as hard as it may be sometimes, keep looking up. A little hope and positivity can go a long way!
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Meme: Keep Looking Up!
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Why Doggie Style is the Best Style for Fighting Factor VII
In the world of bleeding disorders, Factor VII deficiency could be considered the “runt of the litter.” And in the “dog eat dog world” of chasing research dollars, it’s a…
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Why Doggie Style is the Best Style for Fighting Factor VII
EB Tips and Tricks from the Debra CARE Conference
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.…
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EB Tips and Tricks from the Debra CARE Conference
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This Foundation Makes Raising $$$ For Research Look Easy
Finding the money to fund research and the development of treatment (and maybe even a cure) for most rare diseases is difficult for a couple reasons. Rare diseases are notoriously hard…
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This Foundation Makes Raising $$$ For Research Look Easy
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El sacrificion que hacen estos roedores para niños te hará feliz
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…
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El sacrificion que hacen estos roedores para niños te hará feliz
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Would All The Time In The World Teach You About This Disease?
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…
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Would All The Time In The World Teach You About This Disease?
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Amyloidosis Made Simple
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…
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Amyloidosis Made Simple
Meme: Patients are Experts
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…
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Meme: Patients are Experts
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What Walks and Talks Like Hemophilia But Isn’t What You Think?
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…
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What Walks and Talks Like Hemophilia But Isn’t What You Think?
Want to See Your Story on Patient Worthy?
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…
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Want to See Your Story on Patient Worthy?
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