Mark your calendars: The Global Lyme Alliance is hosting the 2016 Time for Lyme Gala on April 2, 2016. Where: Hyatt Regency Greenwich When: April 2, 2016, 6:30 pm-12 am (Midnight)…
Bueno, la gente en la Comunidad de la fibrosis quística, escuchen! Un nuevo tratamiento dirigido para la fibrosis quística (FQ) puede estar en el horizonte antes vs después, y estoy…
Ever wonder what the most annoying things doctors can do? just jump right in to give you advice without asking you some background information I mean c'mon... As a patient,…
What makes a young boy’s eyes light up? What makes him shuffle his feet with excitement or smile from ear to ear? One would think it would be a new…
Happy St. Patty's Day Patient Worthians! But really, what better day (other than all of Lyme Disease Awareness Month in May) than today to spread Lyme Disease Awareness? We have the…
Dear Immune System, I'm onto you. You're not fooling anyone. In fact, you aren't even being the least bit subtle. I know what you're doing. You're tired of the fight.…
no one likes it when you're telling your story or sharing an experience and someone jumps to a conclusion about what you're saying, who you are or what the point…
Con el nuevo año se acerca he estado pensando en maneras que puedo estar más involucrado con mi salud. No es el peso y el ejercicio sin sentido perder norma…
When I walked in to Rare Disease Day 2016 at NIH, the atmosphere was full of hope, on a scientific level, legislative level and patient level. And I'm not just…
There's nothing more important than being able to create collaborative, meaningful and positive conversations between Healthcare Providers and Patients and vice-versa. Another day, another talking tip courtesy of Edward Leigh from…
Amyloidosis is a rare disease that affects organs such as the heart, kidney, liver, the nervous system and more. While there is no cure, there are treatments and organizations that can help. Enter,…
No matter your situation, whether you have a rare disease or got cut with a can trying to feed your cat it's meal, we all have scars that tell a…
Every day we wake up, put on our shoes and meander through our daily activities. But for those living with a rare disease, meandering feels more like a daily fight…
From time to time, whenever we are going through a tough time, whether it be at our jobs, in our personal lives or in our relationships, we tend to forget…
No tengo ninguna experiencia que viven con fibrosis quística o entiendo lo que se siente al pasar por el régimen diario. Yo sé lo que se siente al dar atención…
With all the hype around Virtual Reality headsets, 3D Printing and all other sorts of awesome and weird tech created to "enhance" our already hyper connected lives, the meme above…
I have been off of long-term antibiotic treatment for Lyme disease now for 6 months. How FREEING! During treatment I had so many chemicals running around my body. I had…
Shelly - Back at it again with the meme game! (if you've been living under a rock, click here to check out a kid made famous for wearing white vans...…
Shelly is a wife and mother of 2 amazing kids. She is also living with rare chronic conditions called Intracranial Hypertension and Primary Lateral Sclerosis among a myriad of…
Acromegaly.care is bringing the patient community a webinar tomorrow March 16 12:00 – 12:30 p.m. EST. What is the Webinar About? How to manage acromegaly as a chronic condition, including coping mechanisms and key…
Pastel de calabaza, galletas de jengibre, pan, bastones de caramelo, y chocolates. ¡Oh, qué dulce estación! Hace mis hijos unas cuantas noches y yo pasamos un par de horas agazapados…
So for those of you out there living with a rare disease, I am sure that you are very well educated of all the government and non-government organizations that work…
Today's special #MotivationMonday memes are dedicated to raising awareness about Narcolepsy through our awesome Patient Worthian Kristina. Kristina has had narcolepsy symptoms since she was 12 years old and it…
Hola Pittsburgh! La Fundación de Fibrosis Quística se une al equipo de New Balance Maratón de Formación en tres días separados mientras se entrenan para el maratón de Pittsburgh. Por…
Part 2- A Patients’ Perspective on Healthcare in America-The Ridiculous: That Time When a Revolutionary Act got Lost in the Senate. In July of 2015, the House of Representatives passed…
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