Meme: Taking Care of Yourself
It's not selfish to take care of yourself. It's good for you and it's good for your loved ones. It's hard to be there for other people when you haven't…
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Meme: Taking Care of Yourself
Editor’s Choice: Love and Other Drugs
Welcome back to Editor's Choice Patient Worthians! This week, a PW Contributor told a love story about how her husband's bipolar disorder helps her manage her rare disease. We also have an…
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Editor’s Choice: Love and Other Drugs
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A Special Day for Raising Hunter Syndrome Awareness
Every week, my son’s principal sends a voicemail to parents highlighting the week’s news and activities. At the end of the message, she signs off with a reminder to “Be…
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A Special Day for Raising Hunter Syndrome Awareness
Changing the Use of “Special Needs”
From the perspective of a mother with a child who has a serious and rare medical condition, Pfeiffer syndrome. There are many reasons why the term “special needs” can have…
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Changing the Use of “Special Needs”
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The SMA Miracle: First Ever Treatment Approved for Rare Disease
Imagine walking through the woods at night. You have no lantern and no flashlight—not even a match. The darkness is suffocating, and you’re terrified. But you keep blindly stumbling. It’s…
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The SMA Miracle: First Ever Treatment Approved for Rare Disease
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Obamacare Helped Her Fight HAE: What Happens Next?
Now that the brutal and bruising 2016 Presidential Election is behind us and we’ve waded into the Trump era, maybe we can finally move past some of the most divisive…
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Obamacare Helped Her Fight HAE: What Happens Next?
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!
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Is This a Cystic Fibrosis Breakthrough?
As a Registered Nurse, I think the main thing that I do is educate people. It can be the actual patient, the caregiver, and/or the family. Nurses spend most of…
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Is This a Cystic Fibrosis Breakthrough?
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Hurry Up! Register for the 2017 CRF Day of Hope Family Conference
On Thursday, March 30 – Saturday, April 1, 2017 at the Island Hotel, Newport Beach, California, members of the cystinosis community will gather to support their loved ones, suffering from…
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Hurry Up! Register for the 2017 CRF Day of Hope Family Conference
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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Are You Helping Lysosomal Diseases Research and the World This Week?
This week, WorldSymposia™ is having their 13th Annual WORLDSymposium in San Diego! The goal of the symposium is to help researchers build a better understanding around lysosomal disease diagnostics, areas that…
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Are You Helping Lysosomal Diseases Research and the World This Week?
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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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Holy $%!# Anecdotal Evidence Shows Boxing Dramatically Improves Parkinson’s Symptoms!
In a previous life, I worked with a number of people living with Parkinson’s disease (PD) to help advocate for them and empower them to fight back to make the…
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Holy $%!# Anecdotal Evidence Shows Boxing Dramatically Improves Parkinson’s Symptoms!
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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
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Gitty Up and Go! Exercise Has Good Mojo for Parkinson’s
A startling new study released December 22, 2016 has made some amazing findings about a new “treatment” that will clearly help people who are living with Parkinson’s disease (PD). You…
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Gitty Up and Go! Exercise Has Good Mojo for Parkinson’s
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!
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