Post Rare Disease Day 2016 the FDA's Office of Special Medical Programs announced a new program that would work to provide funding to patient advocacy groups and other organizations who were studying…
How celiac disease, vestibular neuritis, and cervical dystonia have ruined my answer to the most common way to greet people in America. “Hello, how are you?” Is it okay to say…
Alguna vez has tenido uno de esos días en los que simplemente no se sentía muy entusiasmado acerca de su vida? Tú sabes de qué estoy hablando. Los blues de…
Feeling crappy because of Lyme is the WORST. Then, feeling crappy from Lyme TREATMENT is scary. You think you know your Lyme, but then BAM! Treatment gives you random symptoms, from…
When my cat isn't distracting me with his exotic dance routine (he's just trying to get through catnip tasting school okay!? don't judge!) I do research on subjects that help…
If you have chronic Lyme like me, then you know that exercising can be a huge challenge. Your joints might hurt or swell, you might even find it difficult to…
The following memes focus on keeping your happiness and badassery levels high! No matter what your struggles, whether it be dealing with a rare disease or fighting to create awareness…
En el sitio web fabuloso de Cystic Fibrosis Lifestyle Foundation, el blogger de FQ Brian Callanan ha emitido una llamada a la acción. Él quiere saber de todos ustedes si…
Happy Day-After-St.Patty's-Day! As you all know, Rare Disease Week was at the very beginning of March and we have some awesome highlights for you below. One about a young artist…
Dear Body, I thought it was past time for me to write this letter to you. You see, I owe you an apology. I spend most days considering how you've…
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…
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