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Rare Disease Day, 2016: Even Rarer Than a Leap Year, #RareDiseaseDay

Last day of February and a leap year too.


These only come around once every four years, rare enough as days on a calendar go, but not quite as rare as some of the lesser known diseases and conditions that exist, not to mention those who live with them.


And now I present:

To the People Who’ve Never Heard of my Rare Disease – The Mighty

I wrote about having this article I’d written published when it went live, over a month ago, but it bares repeating I believe, today especially.

Today is

Rare Disease Day

and I need to keep talking about it because these things affect so many people’s lives, not only mine and my brother, every single day.

So please share and read and educate yourselves if you can.

There are so many different kinds,

and on this RDD 2016 I got to share my story and personal message with a wider audience. I hope it helps. I hope I can help.

Rare Disease Day 2014


Rare Disease Day, 2015: Ventilation