Looking for a way to celebrate Dysautonomia Awareness month this year? Then you need to check out Dysautonomia International. Why? Because this incredible organization provides wonderful support to the dysautonomia community…
Carnitine palmitoyltransferase II deficiency (CPT II) is a long-winded way of describing a fatty acid oxidation disorder that prevents the body from using fat. It's caused by enzymes that aren't properly functioning,…
In this article, Dr. Richard Fogoros examines the past and present of dysautonomia while also offering some hope for the future. Among his observations: the condition is far from new,…
Are you planning on handing out candy for Halloween? If so I have a suggestion for you! This is the perfect opportunity for you to advocate for the rare disease…
PW Contributor Angie just blogged about one of the most important messages us in the rare disease world need to hear: The Power of Positivity. Read more below: Positivity is hands…
Who doesn’t love a good story? A story that speaks to us. A story that spins a negative into a positive. When I listen to a person tell a story, I…
Wouldn’t it be nice if you could talk to one of those “nationally known” specialists about your aplastic anemia? Well, if you can make it to West Palm Beach, Florida…
Conocemos la persona "típico" que practical el yoga: blanca, "de la nueva era", delgada, extremidades delgadas y acrobáticas. ¿Mencionamos delgada? Con los años, el yoga se ha convertido en la…
They are called, "butterfly children." These butterfly children earned their names for their fragile skin---said to be as delicate as the wings of a butterfly. The official name of…
Addison's disease is another name for adrenal insufficiency -- meaning the adrenal glands don't produce enough of the hormone cortisol and frequently create insufficient levels of aldosterone. Cortisol is the…
Looking for great ways to raise awareness (and, therefore, money) for trigeminal neuralgia? Light up your teal lights? TEAL lights…. as in the color. ‘Cuz if pink worked wonders for…
Approximately one in 15,000 people have a defect in their HTT gene and the outcome of that defect is ultimately life-ending. It's called Huntington's disease, or HD, and the average…
Sunday October 2, 2016 was the IDF Walk For Primary Immunodeficiency (PI) in Boston, MA! As a partnership between the Immune Deficiency Foundation (IDF) and Shire Pharmaceuticals, this walk began at Boston…
From the day my mother introduced us when I was eight, I've believed my step-father was my hero. He is a strong, hardworking, honest man whom I saw as indestructible.…
If you, or someone you love, has Duchenne muscular dystrophy (DMD), then each new possible drug that's brought before the FDA brings with it a sense of hope. Race to…
Takeda Pharmaceuticals is looking for patients to enroll in their new trial, described as; "A Phase 2, Randomized, Controlled, Open-Label, Clinical Study of the Efficacy and Safety of Pevonedistat Plus Azacitidine…
Se les ve en todas partes - a pesar de que se ven fuera de lugar en la tienda de comestibles, o en el cine, o - peor aún -…
Cuando era una niña, Remi Savioz quería una cosa. Y no, no era un cachorro, una bicicleta, o incluso un viaje a Disneyland ... Remi lo que quería era una…
El mundo le gusta una buena historia. Y yo estoy a favor de darle a la gente sus merecidas "felicidades" cuando han enfrentar a la adversidad y logró algo fantástico.…
Is hosting a fundraising event meant to help people who have bone marrow failure diseases, such as aplastic anemia, at the end of October brilliant or insensitive? During the last…
There is a new Phase 3 Clinical that is currently recruiting MDS patients, take a look at the info below if you're interested. For more info and resources about MDS…
I recently read an article about a 22-year-old man from Utah who’d just returned from a missionary service in Brazil and was diagnosed with aplastic anemia. This is so sad…
I read an interesting article posted on Living the Diagnosis by Vicky Warren. I’ve got to applaud her for sheading more light on Ehlers-Danlos syndrome (EDS), a genetic rare disease/syndrome.…
September was dystonia awareness month [but that doesn't mean we can't keep promoting awareness]! Dystonia is a rare neurological movement disorder that can cause involuntary muscle spasms and contractions, tremors,…
Patient Worthy asistió al foro anual de la Fundación EveryLife el pasado martes en Washington, DC. Fue un taller de un día completo acerca de por qué la incorporación de…
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