Spoonflower Supports Rare Disease Day

FEB 25, 2017

Imagine if every time you searched for an answer, you didn’t find what you were looking for. For those affected by a rare disease, this is an every day reality. On Tuesday, February 28, people all over the world are raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives during Rare Disease Day.

Through Spoonflower’s crafting for a cause initiative, we’ve had the opportunity to support children with rare diseases through a partnership with RARE Science. This non-profit research organization focuses on accelerating identification of more immediate therapeutic solutions for kids with rare disease.

In addition to research, RARE Science started the RARE Bear army, a grassroots community-driven outreach initiative where volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare kids.” When we learned RARE Science was using Spoonflower’s custom printing for the bear foot fabric, we couldn’t wait to get involved!

Last year, Spoonflower kicked off the first international RARE Bear Sew-In and now we’re counting down the days to the 2017 sew-in on March 18th. Want to show your support for RARE Science and their one-of-a-kind kids? Click here to learn how to get involved with this year’s sew-in.

Whether you’re sewing a RARE Bear on March 18th or writing a letter to your representative, there are so many ways to get involved! We’d love to know how you’re supporting RARE Disease day – comment below to let us know!

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  • Karen Bullington

    This is the first I’ve heard of this cause and I love it. It’s too late for this year but I would like to be involved in this kind of support. Please let me hear from you about this and other causes in which I might be able to be involved in. I love to sew and be creative with it.

  • One of my bears (or at least a slot to have one personally made) is being auctioned off on March 7th in aid of Sanfillippo Syndrome. A coincidence as I had no idea this was rare disease day and I hadn’t heard of the Rare Bear Sew-In – what a lovely idea. x

  • I’m a mother who’s been struggling to stabilize a rare allergic child . Here in France I don’t find many support and no treatment, but found lot of good leads on the English speaking internet and finally a specialist who could help us… in Canada !

    For my kid, it is a constant reminding that he may not be able to be cured one day and a lot of tiring try. We constantly have to explain his illness and sometime people won’t even believe it exists because they haven’t heard of it.

    This teddy idea is delightful and I thank you very much for sharing. Our troubles look so small regarding others who fight far worse without finding anything to help !

    Thanks again for the love and good vibe you spread !

    A bientôt !