Do you have narcolepsy? Have you ever heard any of the following? “You should get a little more rest; then you’ll be fresh and ready to go.” “Exercise and eating healthy…
Epilepsy and Narcolepsy are related False. Epilepsy and Narcolepsy are NOT related. Sometimes, narcolepsy can be misdignosed as epilepsy. A narcoleptic experiencing symptoms of cataplexy can be mistaken for a seizure. But it…
Life with narcolepsy can be fraught with daily challenges. Excessive daytime sleepiness, cataplexy, or other narcolepsy symptoms can interfere with daily life and activities and make concentration difficult. And for…
Discovery Phase Drugs for Orphan Eye Diseases IVMED-100- 80- 90 are currently without generic drug names. They are under development for the treatment of orphan eye diseases by iVeena, LLC who has 6…
RESEARCHERS BELIEVE SARCOIDOSIS IS ASSOCIATED WITH AN ABNORMAL IMMUNE SYSTEM RESPONSE, BUT WHAT TRIGGERS THIS RESPONSE IS NOT KNOWN. NOR DO DOCTORS KNOW WHETHER HEREDITY, ENVIRONMENT, OR LIFESTYLE AFFECTS THE…
Vitae Pharmaceuticals Announces Positive Top-Line Results From Initial Phase 1 Study of First-in-Class RORyt Inhibitor VTP-43742 in Autoimmune Disorders back in September. Vitae Pharmaceuticals, Inc. (“Vitae”) is developing VTP-43742 for…
Congratulations to Accelmed, the equity investors, who backed SoniVie, a startup company based in Israel that's made a breakthrough treatment device for pulmonary arterial hypertension (PAH). Of course, we owe a…
First of all, what the heck is cataplexy? You may ask if you are unfamiliar the term. Cataplexy is what happens when a person suddenly loses all voluntary muscle control, and…
¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…
A consistent struggle shared by those living with chronic conditions is to what extent that condition defines their lives. It's an ongoing battle and the results are constantly fluctuating. At…
Cheryl Jackson lived most of her life not knowing why she was chronically ill. She had recurring sinus infections, bronchitis, and pneumonia. In her 40s she experienced GI issues that forced her…
I have a love-hate relationship with big cities. Every time I visit NYC, for instance, I feel kind of claustrophobic. I hate that you can’t see large expanses of sky…
if you give it your all, no one will be able to say that you didn't try hard enough. That applies across many possible situations but for rare disease patients,…
focus on the good and the good will be highlighted more often than not.
You may have heard the buzz words "gene therapy" without really understanding what it is, or what's at stake. Gene therapy is when a healthy copy of a gene replaces…
Allowing yourself to be hopeful, allowing yourself the opportunity to shape your future through the lens of hope, will make your rare disease fight that much easier. Fighting a rare…
As my colleague James Earnest Cassady covered earlier this week, Wake Up Narcolepsy, or WUN, has been raising funds for narcolepsy research in a pretty spectacular way: They have a team…
April is right around the corner, and for those living with or caring for someone diagnosed with Sarcoidosis, you know very well that it's going to be National Sarcoidosis Awareness Month.…
never lose hope, for hope is an infinite feeling and disappointment is never everlasting.
Chronic Lyme is as the name indicates...chronic. But it definitely was at it's worst during tough antibiotic treatment. I was recently talking to my girlfriend who is currently going through…
Messages of hope relate to people in different ways. One may see it as an exact description of their life at the very moment they come across it, others may…
Ever feel like you have 1,097,652,876,821 things to acknowledge and take care of and literally none of those things are something you actually want to do? Well let's take a huge…
Rare Conect explica la vida de Annie Kwakkel que nació con cistinosis,una enfermedad genética que afecta aproxima a 1 en 100,00 a 200,000 recién nacidos en todo el mundo. Hoy…
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