“Every Mom and Dad of a child with a rare disease has earned an honorary PhD”

People in academic regalia, photo by 1yen on FlickrThat’s a line from an essay entitled “cri de cure” by Ethan Perlstein. I tweeted it and got some great replies:

Hahaha. I’m often asked by medical teams if I am a MD or nurse. I tell them ‘no,but I have a PhD when it comes to my daughter’ – @SolidFooting

Yes! I know more then most docs! – @mama2ego

I did PhD b4 having Alexis, the journey to diagnose and manage conditions has been more trying. – @drcatherinerose

I’ve handed out a couple PhD’s to @asaarinen in the past few years. 🙂 – @taulpaul

Purple sneakers, photo by Ma Got Sole on FlickrThen we started just having fun, imagining academic regalia — different color hoods for various conditions. And sneakers to match! Who’s up for making this happen? 30 million people is a pretty big market!


5 thoughts on ““Every Mom and Dad of a child with a rare disease has earned an honorary PhD”

  1. Two updates:

    1) Check out this Illustrated Guide to a PhD by Matt Might, a professor at the University of Utah (and also a rare-disease dad):


    2) I realized that, of course, many people living with rare conditions have earned an honorary PhD. We started riffing about parents on Twitter, but let’s not limit it to them. We want those kids to grow up and become experts, too!

  2. Susannah,

    Absolutely agree with you. In fact, we believe that, in general, whenever someone becomes seriously sick these days, someone becomes a web researcher. However, as abundant as the information on the web is, it’s every difficult to locate that information that is relevant to one’s specific case of interest, and especially in a way that people can understand and act. That’s why we created Medivizor.

    Medivizor (http://medivizor.com / @medivizor) will allow people to provide information about their specific situation and then it will provide them any and all information that’s relevant, in a way they can understand and act. It currently is in invitation-only early-access mode and supports only a few medical conditions (prostate cancer, breast cancer, colorectal cancer, and diabetes), so it may not yet be suitable for all rare disease just yet, but give us time and we’ll expand.

    We’d like to help take some of this effort of becoming a PhD and focus it back on other important things in life, while providing all the benefits.

    Would love feedback.


    • Thanks, Tal, for making the jump from Twitter and taking the time to share more about Medivizor. I’ve heard good things about it, even in these early days. As I say, if you believe you can help, I believe in helping people find you.

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