366 talking tips – Importance of talking hobbies with your doctor
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366 talking tips – Importance of talking hobbies with your doctor
Rare Patient Voices Wanted: Speak Your Mind
Last year, the International Rare Diseases Research Consortium (IRDiRC) has established a task force with the objective of promoting Patient-Centered Outcome Measures in the area of rare diseases. What it means is this: The conversation…
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Rare Patient Voices Wanted: Speak Your Mind
8 Signs of Love When Your Better Half Has POTS
Postural Orthostatic Tachycardia Syndrome (POTS) is definitely not an easy disease to live with. You know, the heart rate and all. Oh and those pointless discussions if it's a disease…
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8 Signs of Love When Your Better Half Has POTS
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5 lecciones que nos trae esta madre con fibrosis quística en el 2016
La familia Corr ha tenido un año difícil. Resistente, seguro, pero igual de feliz. Ellos han estado adaptando a la vida con su hija mayor año Harriet. Poco después del…
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5 lecciones que nos trae esta madre con fibrosis quística en el 2016
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Expert Advice: How to Bring Happiness Into Your Life With CGD
Do you consider yourself a happy person? Are you cheery all the time? Most of us are not, regardless of who we are or the conditions we may have—with or…
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Expert Advice: How to Bring Happiness Into Your Life With CGD
The ABCs Of Common Variable Immunodefiency
So, your child has just been diagnosed with common variable immunodeficiency, or CVID. You probably have A LOT of questions, which is only normal. Doctors can be a great resource when it…
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The ABCs Of Common Variable Immunodefiency
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Is A Vegan Diet The Best Way To Fight Sjogren’s Syndrome?
When you’re living with a rare condition like Sjögren’s syndrome, sharing your diagnosis with a famous name can be both a blessing and a curse. Obviously, it’s helpful to be…
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Is A Vegan Diet The Best Way To Fight Sjogren’s Syndrome?
Kristina’s Call to Others with Narcolepsy
When Patient Worthy met with Kristina to hear about her journey with narcolepsy she was happy to put her story out there for more reasons than one. She was hopeful…
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Kristina’s Call to Others with Narcolepsy
Quick And Easy Facts About CGD To Get You Started
Primary Immune Deficiency Diseases, or PIDDs, affect approximately half a million Americans, but there's a twist: There are over 200 different PIDDs, all of which are genetically passed along. Finding…
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Quick And Easy Facts About CGD To Get You Started
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Think You Know About Gaucher? Think Again
How much do you know about Gaucher disease? If you live with the condition or know someone who does, you might know a lot. But have you ever tested your knowledge?…
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Think You Know About Gaucher? Think Again
Meme Motivation – Daily Battle for Consistency
Opening a can of biscuits can be a terrifying ordeal but feeling like one... ooofff. Just in case you didn't know what a busted can of biscuits feels or looks…
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Meme Motivation – Daily Battle for Consistency
“La Vecina” tiene un destino inspirador con la fibrosis quística y el Ejercicio
Si alguna vez hubo una "girl next door", Ashley Coleman seria la manifestacion de esta idea, una mujer joven y bella, de ojos brillantes, rubia y muy activa! Ella tiene…
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“La Vecina” tiene un destino inspirador con la fibrosis quística y el Ejercicio
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Is This Why Sjogren’s Is On The Rise?
When the legendary Venus Williams was diagnosed with Sjogren’s in 2011, it sent shock waves throughout the tennis industry and the world. Seems Venus is doing well these days, which…
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Is This Why Sjogren’s Is On The Rise?
New Show Brings Rare Patients Together
TLC launched a new show less than a week ago that is of particular interest to the rare disease community. Their series “Two in a Million” builds off a concept…
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New Show Brings Rare Patients Together
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Are You A Teen With A Rare Disease? This Is For You
Health insurance. Ew, right? Totally. Health insurance is WHACK. Why you gotta know about health insurance right now? Mkay, I'm done with that. How was it, though? The lingo? Did I appeal…
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Are You A Teen With A Rare Disease? This Is For You
Is Personalized Treatment for CVID on the Horizon?
Sometimes when we’re feeling low over the fact that there’s no cure for what ails people with combined variable immune deficiency (CVID), it’s hard to remember that doctors and scientists…
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Is Personalized Treatment for CVID on the Horizon?
366 talking tips – A Doctor’s Thoughtfulness
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366 talking tips – A Doctor’s Thoughtfulness
Why I Think The Name “Bubble Boy” Has Overstayed Its Welcome
Severe combined immunodeficiency (SCID)—one of the many forms of primary immune deficiencies. You may also know it as the "Bubble Boy" disease. Here at Patient Worthy, we've talked a…
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Why I Think The Name “Bubble Boy” Has Overstayed Its Welcome
366 talking tips – Doctor’s appointments are like plays
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366 talking tips – Doctor’s appointments are like plays
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Acromegaly: A Big Deal That’s Often Misdiagnosed
When someone has too much human growth hormone, or GH, which is produced by the pituitary gland, the most frequent outcome is a disorder called acromegaly. It's debilitating, painful, and disfiguring--and…
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Acromegaly: A Big Deal That’s Often Misdiagnosed
Kristina’s Story: Narcolepsy and Stigma
Unfortunately, stigma is something many patients are all too familiar with. Patients with chronic pain may be labeled as drug seekers. Patients who occasionally need assistance walking and sometimes don't…
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Kristina’s Story: Narcolepsy and Stigma
