Meme: What Lies Within Us
No matter what happened in your past or what may happen in you're future, it's no match for you. You are tough enough to handle it. Your inner strength is…
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Meme: What Lies Within Us
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IPF: What You Need to Know About Benefits of Exercise
Listen up: Scientists in Japan may be onto something big. They’ve discovered there is a significant correlation between the amount of fat vs. muscle that people have and how it…
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IPF: What You Need to Know About Benefits of Exercise
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Buy Your Tickets Now for a PF Broadway Extravaganza Feb. 27!
Broadway Belts for Pulmonary Fibrosis is a yearly musical and comedy fundraiser to fight pulmonary fibrosis (PF). Created 7 years ago to honor the memory of Associated Press theater critic…
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Buy Your Tickets Now for a PF Broadway Extravaganza Feb. 27!
Craniofacial Syndromes Rarely Gorlin-Chaudhry-Moss Syndrome
Gorlin-Chaudhry-Moss, or GCM, is an inherited disorder that falls under the umbrella of craniofacial syndromes. While the fetus is in utero, premature closure between bones in the skull occurs, and that…
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Craniofacial Syndromes Rarely Gorlin-Chaudhry-Moss Syndrome
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Rolling with the Punches of Cushing’s Disease
I read the most AMAZING post—and I mean AMAZING post (I am not kidding! OMG!) written by a woman who has been living with Cushing’s disease for less than 5…
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Rolling with the Punches of Cushing’s Disease
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Unbelievable Abilities of a Mastocytosis Service Dog in NC
We’ve all walked passed a seeing eye dog on duty. The ability of the dogs (and trainers) to learn and react to so much in a safe way is utterly…
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Unbelievable Abilities of a Mastocytosis Service Dog in NC
Este hombre cree en una curación para la distonía. ¿Y Vos?
El ha sido presentado en el National Geographic Channel. Le ha dado la mano al presidente Obama. Ha sido detenido por el servicio secreto. Incluso después de todo eso, Jason Dunn sigue…
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Este hombre cree en una curación para la distonía. ¿Y Vos?
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Straight Talk: One IPF Woman’s Response to “You Are So Strong”
Ohhh, I've got a spark for discussion. I’m verklempt after reading a post from a 30-something woman who is living with idiopathic pulmonary fibrosis (IPF). First, it breaks my heart…
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Straight Talk: One IPF Woman’s Response to “You Are So Strong”
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This Guy Sure Beat the ALS Survival Odds!
On January 8, 2017, a man with one of the most brilliant minds of our age celebrated his 75th birthday. This, by itself, wouldn't be particularly remarkable, however the celebrant…
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This Guy Sure Beat the ALS Survival Odds!
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PBC Patients Will Want to Check Out This Resource
One of the most frustrating aspects of living with a chronic or rare condition is the financial stress it places on patients and their families. Doctor’s visits and prescription drugs…
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PBC Patients Will Want to Check Out This Resource
The Irish Fight for Orkambi Cystic Fibrosis Treatment
Before 10 years ago, 40-year-old Cystic Fibrosis Advocate Jillian McNulty generally had her cystic fibrosis in check… so much that coworkers at the radio station for whom she worked for…
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The Irish Fight for Orkambi Cystic Fibrosis Treatment
Cómo volver si usted se ha perdido contra una enfermedad rara
Después de ser diagnosticado con una enfermedad rara, a menudo hay un sinfín de preguntas que siguen: ¿Qué voy a hacer? ¿Qué es esta enfermedad? ¿Es curable? Y la pregunta…
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Cómo volver si usted se ha perdido contra una enfermedad rara
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A New Treatment for Kids With HAE Shines the Light on Hope
Hereditary angioedema (HAE) causes unexpected swelling in the hands, feet, abdomen, and face. HAE can be fatal when the patient has a laryngeal attack, where swelling in the throat makes it impossible…
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A New Treatment for Kids With HAE Shines the Light on Hope
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Happy Valentine’s Day Patient Worthians!
You can give without loving, but you cannot love without giving. -Amy Carmichael Don't Forget-- It's also National Donor Day. Give one of the ultimate gifts of love this Valentine's…
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Happy Valentine’s Day Patient Worthians!
DMD Drug Sales Halted Amid Controversy
What at first glance sounded like nothing but good news, the FDA's approval of an Duchenne Muscular Dystrophy drug, has complicated undertones. It was announced last week that Emflaza (deflazacort) was approved…
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DMD Drug Sales Halted Amid Controversy
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What We See When We See Cerebral Palsy
The first time I encountered him, I stared at him, mouth agape with genuine shock on my face. He could not fail to notice my expression. Thankfully, he didn’t take…
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What We See When We See Cerebral Palsy
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Exciting Research Has Promise in Parkinson’s Treatments
Recent studies show that there may be a new treatment option for people who have specific forms of hereditary early-onset Parkinson’s disease. It’s actually a new twist on an old…
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Exciting Research Has Promise in Parkinson’s Treatments
CRPS is a the most painful disease you've never heard of.
CRPS: La enfermedad más dolorosa que usted nunca ha conocido
¿Qué pasa si vives con dolor crónico todos los días - y no sólo pequeños dolores, pero dolor de nivel 8 en una escala de 1 a 10? Kirah DeCarlo…
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CRPS: La enfermedad más dolorosa que usted nunca ha conocido
Unlikely, Innovative Cure for Bronchopulmonary Dysplasia
While discussing stem cells can immediately polarize a conversation, the promise they offer could silence the critics. The ability of stem cells to become other types of cells is well…
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Unlikely, Innovative Cure for Bronchopulmonary Dysplasia
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Exercise and IPF: What You Can and Can’t Do
One of the biggest misconceptions around idiopathic pulmonary fibrosis is that once you get the diagnosis, exercise is off the table and there is nothing that you can do to…
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Exercise and IPF: What You Can and Can’t Do
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Everything You Need to Know About HAE
Close your eyes. Now imagine what it would be like to have a hand swell to two, three, or four times as large as it normally is. It could happen…
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Everything You Need to Know About HAE
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FDA Approves New Drug for Children and Adults with SMA
The first medication to combat spinal muscular atrophy (SMA) has recently been approved by the United States Food and Drug Administration. It is approved for use by children as well…
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FDA Approves New Drug for Children and Adults with SMA
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Roll Out the Red Carpet! Preteen Battling Sickle Cell Anemia Goes to the Grammy Awards
12-year-old Sarah Stone has had sickle cell anemia for as long as she can remember. She experiences a lot of pain, takes lots of medicines and has had many surgeries.…
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Roll Out the Red Carpet! Preteen Battling Sickle Cell Anemia Goes to the Grammy Awards
Editor’s Choice: Dreaming of the Golden Years on Super Bowl Sunday
Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…
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Editor’s Choice: Dreaming of the Golden Years on Super Bowl Sunday
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Why Self-Compassion is the Key to the IPF World
Life has its obvious defining moments: graduation, our first house or apartment, falling in love and getting married, seeing loved ones pass, memorable trips, finding success, experiencing failure. The list…
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Why Self-Compassion is the Key to the IPF World
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