- Rare Disease News
Students Raise Money, Awareness, and Empathy for Rare Diseases
Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life. At a recent dance marathon…
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Students Raise Money, Awareness, and Empathy for Rare Diseases
If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!
What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…
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If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!
3 Stops to Increasing Will Power – Hope, Faith, Courage
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3 Stops to Increasing Will Power – Hope, Faith, Courage
Found! The Missing Link in Aplastic Anemia Treatments
Does this word "Musashi-2" mean anything to you? If you suffer from aplastic anemia, it may be the most important phrase you'll ever learn. Scientists are very familiar with Musashi-2 and…
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Found! The Missing Link in Aplastic Anemia Treatments
12 minutos de inspiración – batallando el ICV
Todos nos dirigimos a YouTube aquí y allá; para una buena risa, un pequeño segmento informativo sobre la nueva palabra añadida al Urban Dictionary, o un clip de Saturday Night…
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12 minutos de inspiración – batallando el ICV
Rare Disease Tip – Don’t Say These Five Things
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Rare Disease Tip – Don’t Say These Five Things
10 Tips for When Your Rare Child Grows Up
Rare conditions are difficult on so many different levels. It’s hard to find someone who can relate, to find a physician who is familiar with the treatment options, and to…
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10 Tips for When Your Rare Child Grows Up
POTS: A Rare Disease Commonly Missed
What would you do if Princess Leia suddenly went pale and passed out right in front of your eyes? Well, Crystal Caldwell's mother had that experience years ago while taking…
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POTS: A Rare Disease Commonly Missed
Young Woman with Cystic Fibrosis Making the Most of Her 2nd Chance at Life
Little Miss Positive, Georgina Compton, is making the most of her second chance at life. Last year Georgina (George) Compton faced the very real prospect of dying at the age…
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Young Woman with Cystic Fibrosis Making the Most of Her 2nd Chance at Life
This is the Formidable Force Facing Down Behcet’s Disease
Sometimes, you just gotta be an unstoppable force... What do you do when you’ve been diagnosed with a disease like Behcet’s, something so rare that information and resources about it…
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This is the Formidable Force Facing Down Behcet’s Disease
Ambas caras de la moneda: El doctor también es el Paciente
Psiquiatra Dr. Jennifer Pate, de 47 años, recibe infusiones intravenosas de inmunoglobulina que salvan vidas cada tres semanas. Esto no es por elección, porque sin ellos, su sistema inmunológico está…
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Ambas caras de la moneda: El doctor también es el Paciente
What Are The Odds CVID Treatments Will Get Better?
Finding treatment for a rare disease like CVID can feel like a dice roll. How can you find an effective treatment if doctors don't know exactly what's wrong with you? Dr. Harry…
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What Are The Odds CVID Treatments Will Get Better?
Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek
IIIIIIIIITTSS.... MEEEEMEEEEE MAAAKING TIIIIIIIIIIIIIME! Remember that sneaky little quip I hid not so secretly into a 366 talking tip post a couple of weeks back? well the time has come…
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Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek
Welcome to Lyme Disease Awareness Month
May is Lyme Disease Awareness Month and like other awareness months, it's all about educating the medical community and the community at large. Lyme disease is one of, if not the…
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Welcome to Lyme Disease Awareness Month
University of Pennsylvania Football Team Kicks off Fundraising for Castleman Disease Research
His name is David Fajgenbaum. Although he is now a medical professor, his own journey with health and wellness has been a tumultuous one. His story starts with his time…
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University of Pennsylvania Football Team Kicks off Fundraising for Castleman Disease Research
Dystonia Moves You. 5 People Make That a Good Thing!
Each step with dystonia can feel like a marathon. As it turns out, some people in the community mean that literally. Marathons—the 26.2 mile behemoths—have become a worldwide phenomenon. The TCS…
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Dystonia Moves You. 5 People Make That a Good Thing!
Model with Cystic Fibrosis Bringing Awareness to Disease
This model with CF took part in photo shoot for awareness campaign while suffering from pneumonia! Professional model Cassie Hawthorne is acting as the face of a social media campaign…
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Model with Cystic Fibrosis Bringing Awareness to Disease
Esta familia buscó 5,5 años para obtener un diagnóstico ICV
En el otoño de 1991, Kathy dio a luz a un hermoso niño llamado Isaac. Pero Kathy y su esposo sabían que algo no estaba bien. Isaac era su tercer…
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Esta familia buscó 5,5 años para obtener un diagnóstico ICV
Is This Your Best Tyrosinemia Option?
Imagine your child is stuck at the bottom of a long transplant waiting list when he or she desperately needs a new liver. The thought is terrifying--and for many, terrifyingly…
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Is This Your Best Tyrosinemia Option?
3 Painful Misdiagnoses You Do Not Want To Get Stuck With
A guy walks into an emergency room. He tells the doctor, “I’ve got abdominal pain. Can you help me with my (IBS)?” The doctor shakes her head and says, “No, but…
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3 Painful Misdiagnoses You Do Not Want To Get Stuck With
See What This Family Did to Reward a Good Foundation
Fundraising isn’t easy. Like, it’s beyond not easy. But when the cause is right, you’ve just got to try. And the Reardons certainly have a good cause. When their son…
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See What This Family Did to Reward a Good Foundation
Why Was This Little Boy Wasting Away?
For the Rust family, 2015 was challenging—challenging in ways they never thought imaginable. Why? Because this past year, their eight-year-old son Jourdin began displaying peculiar symptoms—extreme weight loss, in particular—which started…
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Why Was This Little Boy Wasting Away?
The Secret To Surviving When You Have A Tyrosinemia Newborn
Carri Levy’s article about a New Jersey couple John and Amanda Miller, is one of many articles and blogs I’ve read about the Millers; it’s really struck a chord with…
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The Secret To Surviving When You Have A Tyrosinemia Newborn
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