Tuesday, February 24, 2009

In Preparation: Rare Disease Day

Those of us who have a rare disease often fly under the radar—there are few trendy wristbands, colored ribbons, or designated awareness months for our diseases. This is why I am excited that February 28, 2009 will be the second annual worldwide Rare Disease Day.

Sponsored by the National Organization for Rare Disorders (NORD) in the United States and more than 200 other partners, the purpose of Rare Disease Day is to:

“Focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.”

(In short, to raise awareness of rare diseases as a public health issue.)

I often talk about how the universals of living with chronic illness outweigh the differences in diagnoses and symptoms, and I truly believe that. Yet within that umbrella of chronic illness, many of us living with rare diseases face our own unique set of circumstances.

As I prepare an official post for Rare Disease Day later this week, please let me know if you live with a rare disease and have any thoughts or comments you’d like me to include.

A few other odds and ends:

I was captivated by the NYT Sunday magazine article “What’s Wrong With Summer Stiers?” that focused on undiagnosed illness—this isn’t too surprising given what I consider the close connection between rare diseases and undiagnosed diseases. Be sure to click on over.

Speaking of links, I couldn’t resist the stream of URLs and commentary any longer—that’s right, I’m now officially on Twitter (achronicdose) if you’d like to follow me there.


britta said...

Rare disease mention.....the internet is almost useless when having a rare disease and so is a book....and even doctors. Even my rare arthritis is rarely (no pun intended, haha) found on arthritis resources!

I feel like I could go on for days...

Anonymous said...

Laurie, thanks again for reminding everyone that we have more in common that what we don't regardless of our illness(es). Though it must be frustrating to have a rare disease, when it comes to "rare" when it's us diagnosed with it, it feels "rare." It's easy to get caught up in the "grass is green" syndrome, thinking those with rare diseases have it better (or worse) than those of us with "popular" illnesses. Regardless of our illness, we are all on the same side. If we continue to bond together and combine our efforts we can make much more of a difference than if we all only participate in groups of people who have the same illness as us.

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