If you’ve only just found us—welcome to Global Genes! We are over the moon and across the universe with gratitude for USA and Royal Pains. We had a blast working with their writers earlier this year to help them get the facts on rare disease.
So whether you came here looking for a diagnosis, support, or maybe even just blatant curiosity, we invite you to come on in and get invested in the strange, worthy and engaging cause that is the rare disease community.
As the plot thickens during this season’s Royal Pains, you’re going to get a ton of info on rare diseases. So to get you pumped for next week’s episode, let’s dig into some of the history of these most unique conditions.
Did you know that there are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day?
30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
Not such a small world after all, huh?
Wondering what kind of diseases fall into the rare category? Check out our mega list of rare diseases.
(Note: Beiber Fever is not a rare disease. It should be, but it’s not. Please stop asking us to add it.)
Royal Pains obviously made our prized list of modern media portraying the realities of rare disease. But our full list of rare tv shows, movies and documentaries can be seen on our site here.
(Note: The Walking Dead doesn’t make the list. Think about it. Pretty much everyone on the planet was a zombie. When it’s the apocalypse–it’s not rare.)
Not a visual learner? Check out our weekly podcast episodes with Daniel Levine. The experienced host chats up the biggest stars in the rare disease community and pharmaceutical industry. Get caught up on our RARECast here.
Okay, but you’ve got questions, right? Been there. That’s why we started doing regular webinars with rare experts. They’ll give you the low-down on how to empower yourself as a patient or a caregiver to someone with rare diseases. For more info on RARE Webinars, click here.
Global Genes has so much to offer in terms of support including a new Drug Development White Paper, an Undiagnosed Disease Program, the Rare Disease Impact Report, RARE Toolkits and clips of all the great and informative segments on Lifetime TV’s Behind the Mystery.
And while we’re happy to consult with experts, give you updates on the pharmaceutical breakthroughs and work to get you educated and involved with rare disease legislation—we know that patients connect most when they meet patients just like them.
We encourage anyone with a rare disease to please consider sharing the story of their diagnosis, treatment and how their disease has changed their life through a patient story on our blog, The RARE Daily.
Keeping learning at The RARE Daily and keep watching Royal Pains on Tuesdays at 10/9 C to see whether or not rare disease patients will be flocking the Hamptons this season.