Rare Disease Day

#RareDiseaseDay 2017

Posted on by Mark Aldrich

In 2015, when I wrote about Rare Disease Day, a friend asked, tongue firmly in cheek, “Why not have Rare Disease Day on February 29th?” I admit that when I learned about Rare Disease Day several years ago, after I was diagnosed with one, a similar joke crossed my mind.

Each year, the last day in February is the date for International Rare Disease Day, and Leap Day or not, today offers the opportunity for us to remind the world that rare diseases are not at all rare.

Today, February 28, is International Rare Disease Day, and “Research” is this year’s theme.
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‘Making Our Voices Heard’: Rare Disease Day 2016

Posted on by Mark Aldrich

Last year, when I wrote about Rare Disease Day, a friend asked, tongue firmly in cheek, “Why not have Rare Disease Day on February 29th?” I admit that when I learned about Rare Disease Day several years ago, after I was diagnosed with one, a similar joke crossed my mind. Each year, the last day in February is the date for International Rare Disease Day, and Leap Day, that quadrennial day, is a good one for us to remind the world that rare diseases are not at all rare.

Today, February 29, is International Rare Disease Day, and “Making the voice of rare diseases heard” is this year’s slogan.

Rare Disease Day was first established in 2008 by EURODIS, the European Rare Disease Organization. In 2009, the National Organization for Rare Disorders (NORD) in the United States joined the effort to educate the public.
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ALS, SMA, and Nice Ice

Posted on by Mark Aldrich

Each one of us is a part of an interest group. This does not mean each of us must carry out the duties of being an official representative of said interest group, but, for example, I might be the only Jewish person you know. As such, I try to be a good guy and hope that this represents good things.

(I have been that one before, actually—when I lived in the Midwest—and I had some fun with it. Not that there are zero Jewish people in Iowa, there are, but one couple that I got to know had not met one or they claimed to have not. Which makes me a member of yet another special interest group: I may be the only Jewish person you know who was the first Jewish person someone met or said that they met. Life is full of milestones.)

I am male, middle aged, half-Jewish, half-Baptist, an alcoholic in recovery, tall, thin, and I have a disease that is disabling me. It is spinal muscular atrophy, type 4. Do any of these things merit me tapping on your shoulder and requesting attention from your charitable impulses? Or your attention at all?
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