Wednesday of Rare Disease Week was Lobby Day! Patients, parents and advocates "stormed Capitol Hill" after a Lobby Day breakfast with speakers that included the newly confirmed FDA Commissioner, Robert M.…
It’s a terrible thing to lose someone. There’s no getting around that. But some people can take loss and find new purpose. For Eric Marder’s family, that purpose became Eric’s…
As most people with narcolepsy are probably aware, current treatments are designed to help manage symptoms rather than treating the underlying cause of the condition itself. Recent advancements, however, have pinpointed…
Uno pensaría que en el mundo actual de la tecnología, estaríamos delante de la curva, especialmente en lo atinente a las pruebas de diagnóstico / pronóstico. Lo que pasa con…
I just read an interesting article that explains how individuals with active Acromegaly have less fat and more muscle than those without Acromegaly. They also have more GH and perhaps IGF-l (a growth factor not…
Complex regional pain syndrome (CRPS) is a condition characterized by prolonged or excessive pain together with changes in skin color, temperature, and/or swelling in the affected area that can be…
The European Organization for Rare Diseases awarded Actelion Pharmaceuticals the EURORDIS Company Award 2016, for their research and support of patients with Pulmonary Hypertension. “I am very proud that, together with…
Huntington's disease is a heartbreaking condition that causes brain neurons to deteriorate. People with Huntington's lose motor control, have involuntary motions (chorea), and decline mentally. At this time, there is…
Ping pong can be added to the list of physical activities that aid Parkinson's patients with the debilitating effect of the disorder. And unlike some solitary exercise like walking on a…
Picture this: Little ol' you enjoying a night at the theater. Mid-movie, you drop to the ground, completely paralyzed. Your limp body looks lifeless; but you can still hear and…
He descubierto que a través de todo esto, mi hijo ha empezado a preguntar, '¿Cómo puedo ayudar? ¿Que puedo hacer?' En cierto modo, esas son las mismas cosas que le…
Greetings Patient Worthians! This month we are highlighting Amyloidosis, a rare disease that affects organs such as the heart, kidney, liver, the nervous system and more. While there is no…
Si, el fin de semana del 9 de Octubre, vio a la Hereditary Angioedema Association (HAEA) en las nubes y feliz-- pero no de la manera en que estas pensando!…
Technology today is taking us to new (un)comfortable heights, at a pace few would be surprised by. For those who are living with narcolepsy, this self-piloting drone could be a…
A los 5 años de edad, Hadley Alexander no es normal. Cada mañana, su día comienza oficialmente a las 7 am Ella convenció despierto por sus padres y, a través…
At 103 years old, you might expect your hands to shake a little, or maybe a lot. But what if you had an eagle-eyed medical student helping you with your meal? Suddenly,…
Good day to you PatientWorthians! We can't express to you just how excited we are to be attending this year's Rare Disease Day® at the NIH main campus. As laid out…
The Cystic Fibrosis Foundation is an incredible resource for anyone living with the condition. Recently, they put together advice to help those living with CF manage their treatment plans. Among the highlights: If…
All of us have been there: you're at work and an important deadline is coming up--your boss is breathing down your neck, and your co-workers are micro-managing the project. It's…
Q: What is Gaucher Disease? Gaucher's is a genetic disorder with varying symptoms that range from mild to severe physically as well as neurologically. People with the Gaucher have a…
Last week at the 4th Systemic Sclerosis World Congress the results of a study conducted by University College London and Actelion Pharmaceuticals were presented. The findings? A sign of hope.…
For more than half a century, Grandview, Michigan, resident Bruce Mannes has taken a drug Cuprimine (penicilamine) to manage his Wilson's disease, a genetic disease that prevents the liver from properly filtering the…
Okay, people! Let’s hear it for Kristen, a fiercely determined young woman who refuses to give up after being diagnosed with postural orthostatic tachycardia syndrome (POTS). I feel absolutely dumbstruck…
According to Cosmopolitan, Crista Procopio, a woman from Phoenix, Arizona, had a tough time getting through to doctors that the severe dizziness, pain, and digestive issues she was living with were…
Shortly after Joshua Holdner was born, he entered into a fight for his life. He had a hard time nursing, and when he did eat, it was quickly followed with…
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