Take a deep breath and know that even if other can't see it, your day, living with chronic illness, has been a battle. Every part of today has been a…
I would look into the mirror each day and not recognize the face staring back at me. It wasn’t that I was getting older or that I had gained some…
MPS Awareness Day has come and gone, but that won't stop us from spreading information! In honor of MPS Awareness Day (which took place on May 15th), we'd like to do…
June is the awareness month for myasthenia gravis. People with MG are known as Snowflakes because no two snowflakes are exactly the same, just like no two people with MG…
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,…
Not many diseases affect the nervous system like Parkinson Disease. Millions of people had no idea what Parkinson Disease was, or how life-changing it could be, until one of America’s…
It seems like everyone and their mom has a GoFundMe page for something or other: Want someone else to pay for your trip to New York? GoFundMe. Jumped off a…
¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…
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