IPF (Idiopathic Pulmonary Fibrosis) Awareness Month is coming up in September. To help raise awareness post something on your favorite social media site and use #IPF #IPFWorld #BlueUp4PF! Go to…
Clinical trials are absolutely critical to our understanding of how a drug works and whether it’s safe for use in humans. While clinical trials are not the final word in…
About two months ago, I bucked up and started recycling. (No this is NOT clickbait.) Now let me first explain that for years as a “responsible adult,” I did my…
¡NOTICIAS DE ÚLTIMA HORA! Pronto puede haber otro tratamiento para pacientes del IP! La compañía ADMA Biologics, Inc. ha desarrollado una nueva opción de tratamiento, RI-002, para los pacientes que…
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!
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…
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…
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…
For anyone living with acromegaly, which substantially increases growth hormone, it shouldn't be a secret that the condition is hard to treat. The gold standard for first-line treatment has been…
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,…
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…
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.…
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…
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…
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…
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…
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…
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…
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…
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,…
Take Snoopy's advice, as hard as it may be sometimes, keep looking up. A little hope and positivity can go a long way!
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…
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…
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