Cool Toys Pic of the day – Rare Project / Open Registry Project / MORE


Yesterday was the 5th annual Rare Disease Day. I discovered this
through Denise Silber, a social media friend of mine in Paris, who is
obviously a delightful woman, and who promoted and pushed and gathered
a team of amazing collaborators to reach out to the broadest possible
community. I would have been tracking this anyway, though, simply for
the extraordinarily thoughtful and effective uses of social media.

Rare Disease Day:
– On Youtube:
– On Flickr:

I’ve blogged about that before, so I refrained this year, especially
since I knew today I’d be watching the FDA’s first ever Rare Disease
Patient Advocacy Day.

FDA Rare Disease Patient Advocacy Day:…

The morning broadcast was wonderful, but I couldn’t get audio in the
afternoon. The Twitter stream was not as active as I’d wished, and
there was no assigned hashtag, which made it hard to track the
conversation. Still, that was how I found the RAREProject.

– Blog:
– Twitter:!/RAREproject

And it was through them that I found out about the Open Registry Project …


In their words:

The RARE Project is encouraging all families with RARE diseases to register with the ORP and to contribute their medical history and ongoing/daily medical experiences for the benefit of other families (including you!) and researchers. Every time you enter a piece of data into the ORP you will get a piece of information back – usually in the form of a comparison of how your data compares to others with the same disease, symptoms, or therapies.”

… which takes on new meaning in light of the announcement that
patients with rare diseases can have their genome sequenced at no

Patients with Rare Diseases to Get DNA Sequenced at No Charge:…

… as part of the Rare99X Clinical Exome Challenge.

Rare99X Clinical Exome Challenge:

Well, well, well. What a day.

Enjoy the absolutely wonderful 2012 Rare Disease Day Poster:

2012 Rare Disease Poster


4 thoughts on “Cool Toys Pic of the day – Rare Project / Open Registry Project / MORE

  1. Hello out there to Cool Patricia ! Can’t believe it was that many years ago–Only one February 29th every presidential term. But, ah yes, it was. Good luck to all RareDiseaseDay supporters. Rare Disease is the best ever example of the necessity of patient participation, experience, pro activism…

  2. Yes, yes, yes. 🙂 THIS >> “Rare Disease is the best ever example of the necessity of patient participation, experience, pro activism…” Bless you, Denise!

  3. Pingback: A Culture of Blame: Stigma in the ER (Rare Disease Day 2015) | Emerging Technologies Librarian

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