Rare Disease Meme – Coffee: A cup with of benefits
Rare Disease Meme – Silence and Reflection
Rare Disease Meme – You Know You’re Sick When
#SarcoidosisAwareness: Cause
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…
Breaking News: New Hope for PAH Sufferers! Is This THE Cure?
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…
Rare Disease Meme: Dealing With Disappointment
never lose hope, for hope is an infinite feeling and disappointment is never everlasting.
Young Daughter with Cystinosis Inspires Mom
Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…
¿Por qué es Canadá, el lugar para estar con FQ?
Oh Canadá, la gente piensa que eres todo "por favor y gracias", y el jarabe de arce, pero conozco la verdad: Eres un luchador y esa lucha es más evidente…
10 Cosas el síndrome de Ehlers-Danlos me ha enseñado
10 cosas que he aprendido viviendo con el síndrome de Ehlers-Danlos 1. No es tan malo ser espontáneo Cuando era más joven yo tenía planes y listas para toda mi…
Conozca a Ronnie: ejerciendo su derecho heroico para inspirar a la Comunidad con Fibrosis Quística
PatientWorthy está asociando con CysticLife.org para poner de relieve algunos de los miembros en su increíble comunidad! CysticLife.org surgió de un blog iniciado por paciente con FQ, Ronnie Sharpe, para…
The Crooked World of Life with Dystonia
In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world. Bent at nearly a 90% angle, she frequently…
Bailaras de la felicidad cuando leas acerca de este muchachito!
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…
Meme Monday – Focus on Positivism When Managing Your Rare Disease
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…
366 Talking Tips
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…
Rare Disease Mom’s Inspirational Memes – Shelly
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…
Rare Disease Mom’s Inspirational Memes – Shelly
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…
Rare Disease Mom’s Inspirational Memes – Shelly
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…
Rare Disease Mom’s Inspirational Memes – Shelly
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...…
Rare Disease Mom’s inspirational memes – Shelly
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…
A Guide to Rare Disease Organizations
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…
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