⏱️ Countdown to Rare Disease Day: 35 Days
Oft-requested, long awaited… MdDS logo’d t-shirts are available again! And just in time for Rare Disease Day.
Tag: rare disease day
Raise Your Voice: #RareDiseaseDay 2016 is Coming
By definition, a rare disease affects a small segment of the population, yet combined the 7,000 known rare diseases affect 30 million people — that’s 1 in 10 of us. Many Americans do not realize how common rare diseases are and that our community has tremendous unmet medical needs. On February 29, join together to raise your […]
It’s Rare Disease Day! Tell us the challenges you face having a #RareDisorder
When we talk about the statistics, that 1-in-10 Americans has a rare disease, of which there are about 7,000, what does that mean? To you? While it’s true that rare diseases and disorders affect 30 million in the US alone, to you it probably meant you spent a lot of money, visiting doctor after doctor, […]
How Are You Celebrating Being Rare?
The MdDS Foundation and our partner in advocacy, the National Organization for Rare Disorders (NORD), is celebrating Rare Disease Day on February 28, 2013. Last year we worked to create advocacy on the state level, with many Governors’ Proclamations of Rare Disease Day. This year NORD suggests some new ideas on how you can celebrate being rare. […]
I met another 1-in-10 today!
February 29, 2012 – Sitting in a business meeting, I casually mentioned that it was Rare Disease Day and a woman raised her hand proudly and said, “I have a rare disease!” I shouldn’t have been surprised, but I was. Having an orphan disease like MdDS, we so often feel isolated, and it seems like […]
Marching to Rare Disease Day
Yesterday, I sent a request to Governor John Hickenlooper, to declare February 29, 2012 as Rare Disease Day in Colorado. Getting your governor’s proclamation is important because it raises awareness about orphan disorders like ours. It was actually pretty easy, but it would’ve been even easier if I’d known a couple of things beforehand. Today, […]