Antes de que me diagnosticaran oficialmente con el síndrome de taquicardia postural ortostática (POTS, por sus siglas en ingles), pensaba que los síntomas extraños eran una parte de mí ser.…
Congratulations to Kristin, the winner of a $500 travel stipend to get to the 2016 Acromegaly Community Bi-annual Meeting! Patient Worthy is so excited to meet you Kristin! We are excited to…
It's officially April and it's officially the WEEKEND! PW Contributor Alexis writes of how her experience with PTSD relates to going through the process of diagnosis and treatment of chronic…
When Myasthenia Gravis is diagnosed in a child, it is called juvenile myasthenia gravis (JMG). But for 4 year old Julius Chatman, the diagnosis was ocular myasthenia gravis. A very rare case,…
we may look different on the outside, but each one of us is unique on the inside, and that holds true more so when it comes to treatment options. I'm…
Los tratamientos para enfermedades autoinflamatorias comúnmente requieren un paciente para recibir inyecciones debajo de la piel, lo que puede ser difícil si usted es el padre de un niño pequeño…
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…
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…
¿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…
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.
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