Moebius Syndrome, rare disease day

Thoughts About Rare Disease Day 2012

January 29 is International Rare Disease Day.  Strangely enough, rare diseases are collectively not rare – about one in 10 people have one.  Or if you’re like me, you have/had multiple unrelated (or related, who knows!) rare disorders.  It’s striking, though, how common they are.  Everyone knows someone who has something.  And for me, I think that’s why I connect to Rare Disease Day.  I mean, raising awareness for Moebius syndrome is needed and wonderful but I like how Rare Disease Day contextualizes everything for me.  My experience, although unique to Moebius syndrome, is actually not that inherently different from people with a variety of different medical conditions.  But without Rare Disease Day and some of the organizations such as NORD who are working to unite the rare disease community, we wouldn’t be able to connect and realize that we share these similarities even with different conditions.  So for me, that is the take-away part of Rare Disease Day 2012: that we share so many similarities across disorders and conditions, and that need to learn from each other and work together to promote change and understanding.  And I think it’s happening, slowly but surely.  At least I hope so.

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