Today is International Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day! We at Patient Worthy understand that a lot of these diseases you may not have heard of - which is exactly why awareness…
As we close out the month of March - it's important to give a little thought to some of the lesser-known rare diseases that are often overlooked. Bleeding disorders is…
March is not just multiple myeloma awareness month... ...it is multiple myeloma ACTION month! Multiple myeloma is a form of cancer that develops in a type of white blood cell…
Last week was World Kidney Day! And in fact, the whole month of March is kidney month - so there's no excuse to brush up on some key kidney facts…
For so many of us, a good night's sleep is a refuge; from our long hectic days, from our piling problems, or even from the stresses of managing our rare…
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
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…
This Wednesday, the last day of February is internationally-recognized Rare Disease Day - a day when we realize that in fact - rare diseases are not so rare. There are…
February is Eisenmenger Syndrome Awareness month. Eisenmenger syndrome is very rare and devastating, so it deserves our attention. Let's get to know a little more about this heart condition. Eisenmenger syndrome…
This week is Congenital Heart Defect Awareness Week! A congenital heart defect (CHD) is a problem in the heart's structure that occurs when a baby is born. Heart defects can range…
Start a conversation - and look a little snazzy while doing so! - by wearing purple today (February 2nd) to raise aware for neuroblastoma. Neuroblastoma is a rare cancer that…
Love them, hate them, or love to hate them - celebrities are a big part of our culture. They sell us clothes, perfumes, lifestyles - and some we even elect…
Inspiration is everywhere—from the words of your favorite writer to the blooms and leaves on your morning walk. You just need to open your eyes, and breathe it in. Sometimes, inspiration just…
Scotland’s Aaron Hunter went on Twitter to challenge the one and only Iron Man. He asked him for help with raising funds and awareness for rapid-onset obesity (RO) with hypothalamic dysregulation…
Photographer Martin Schoeller has partnered with Olympic medalist and renowned author Dara Torres for the Show More of You campaign for psoriatic disease, sponsored by Celegene Corporation and Otezla® tablets.…
Mark your calendars because World Parkinson's Day is here!! Winter is (mostly) over and spring is hot (emphasis on hot) on it's heels! And, of course, April showers means we're…
If you, or a member of your family, is affected by a congenital disorder of glycosylation, or CDG, you are most likely familiar with the terms, definitions, and physical impact…
Concientización ... Activismo... Abogacía Estas son sólo algunas de las palabras que usamos para exigir medidas a cualquier persona ya sea los líderes mundiales, las industrias, los amigos o la…
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
Usted no va a venir a través de demasiadas personas en sus vidas como Elaine Gómez y su hija, Michelle DeMont. Y es probable que no se encontrará con el…
I have been told that one of my first words spoken was "Why?" Ever inquisitive, I have always had a fascination with the how and why. As a child I…
Raising Awareness...Activism...Advocacy... Those are just some of the words we use to demand action from anyone whether it be world leaders, industries, friends or family. Every day we engage in…
Mary Vicencia knows what it’s like to be sick as a dog. For a while, she was basically an expert in feeling downright bad. In fact, she’s a lot like…
What's the best way to raise money and awareness when you have a rare disease? Organize or participate in an event, duh. That's exactly what Dwayne Backer has been doing…
Sam Bradley hit the dystonia jackpot, but that's not a good thing. Bradley won the NCAA record for the quickest (wrestling) pin in college, and is a black belt in karate,…
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