“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!


Rare Disease Day 2013

People living with rare conditions inspire my work every day. A few resources to check out:

Follow @RareDiseaseDay on Twitter or subscribe to my Rare Disease list

Read Wendy White’s post on e-patients.net: Rare Disease Day 2013: Help Spread Awareness

Read the Pew Research Center’s report featuring insights from people living with rare conditions: Peer-to-peer Healthcare

Examples, please: peer-to-peer healthcare

I’m writing an article and would love to tap into this community’s knowledge.

I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with each other.

Also, I know of patient-led groups which are powerful resources for their members, such as ACOR.org and the many groups affiliated with the National Organization for Rare Disorders, but again, I’d love to learn about some new examples, especially ones which are organized around common conditions like asthma or high blood pressure and (bonus points) have bridged the gap to include connections with clinicians.

Finally, when I think of behavior change writ large (ie, population-level) I think of organizations like Weight Watchers and Alchoholics Anonymous. Are there any other health groups that come close to those two in terms of scale and notoriety? MedHelp claims 12 million monthly visitors, for example. Does anyone else have those numbers?

Comments, please!