“Do you know what the world’s third most populated country is?”
It’s a question that Dr. Rafael Sousa Fernandes posed in an OpEd, wrote that made all of us here at Patient Worthy reflect, especially so close to Thanksgiving and the holiday season.
For all you trivia nerds – the answer is the United States, with a population of more than 326 million people.
But Dr. Fernandes’s point is that those living with a rare disease – an estimated 350 million people globally – essentially constitute the third largest country in the world!
Feeling less alone and rare?
“Every day, millions of persons worldwide are fighting to live with a rare disease, aiming to change the perception of this limiting condition and struggling to create a voice that represents this big group of persons. They want to have the chance to live every day with the best quality of life”
Amen!
That is why Patient Worthy works so hard to shine a spotlight on the stories that don’t get attention every day regarding rare diseases – and more importantly, the rare disease warriors who fight each and every day.
And we are so grateful to have the opportunity to have that spotlight and share it.
“The truth is that the field of rare diseases suffers from a deficit of medical and scientific knowledge. For a long time, doctors, researchers and policy makers were unaware of rare diseases and until very recently there was no real research or public health policy concerning issues related to the field. Specific issues are equally raised regarding access to quality health care, overall social and medical support, effective liaison between hospitals and general practices, as well as professional and social integration and independence.”
That’s exactly right, which is why even the smallest story about a child getting a makeover or a new app aimed at helping rare diseases can make such a difference. The more people talk about it, the more awareness we raise.
What are you thankful for this Thanksgiving?
This Thanksgiving, we are grateful for the community of brave, smart, and compassionate fighters who lift our spirit up each and every day – and we are thankful for the nearly daily news of new studies, drug trials, and everyday stories that give us hope.
