⏱️ Countdown to Rare Disease Day: 35 Days MdDS Foundation 12:16 pm Announcements 24/01/2017 ⏱️ 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. Read More
Raise Your Voice: #RareDiseaseDay 2016 is Coming MdDS Foundation 6:00 am Raising Awareness 04/01/2016 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 […] Read More
It’s Rare Disease Day! Tell us the challenges you face having a #RareDisorder MdDS Foundation 6:00 am Raising Awareness 28/02/2014 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, […] Read More
How Are You Celebrating Being Rare? MdDS Foundation 3:53 pm Raising Awareness 29/01/2013 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. […] Read More
I met another 1-in-10 today! MdDS Foundation 2:50 pm Faces of MdDS 07/03/2012 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 there’s […] Read More
Marching to Rare Disease Day MdDS Foundation 5:59 pm Raising Awareness 12/01/2012 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, […] Read More
