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Rare Disease Day 2015



Saturday February 28 is World Rare Disease Day. I’m always happy to support this effort – the numbers are staggering, if you think about it: one in ten people are affected by a rare disorder (if you like infographics, Global Genes Project has a few illuminating ones related to rare disorders).

Although all 7,000+ rare disorders are obviously different, the experience of living with these conditions share many commonalities – the search for a diagnosis and knowledgeable physicians, the search for information and community, and the powerful connections you get with shared experiences.

It’s important to channel the National Organization for Rare Disorders motto – “Alone we are rare. Together we are strong” because it is true – the collective power of this community is truly powerful.

Because I have a t-shirt purchasing problem (and because I really love the sentiment and meaning of this shirt), I just had to get this one from Global Genes… I truly do know and love so many people in the rare disorders community. And I try to love myself, as much as my perfectionist self can! Maybe wearing this will have it rub off a bit…

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