A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Wednesday, January 16, 2013

Rare Disease Day is Coming

Every year the last day of February is Rare Disease Day. For more information about Rare Disease Day click here and here and here

This day is promoted by The Global Genes Project. The logo for Global Genes is a pair of blue jeans. Get it? You can see the logo on the left side bar of my blog. If you click the logo it will bring you to www.globalgenes.org


Last year I asked a friend of mine if she would be willing to make some hair ribbons with the Global Genes logo. I purchased a few and other families affected by rare diseases also purchased some. I spoke with her a few weeks ago and she still has some in her inventory - hair bows and headbands. You can see her Global Genes items in her online shop Hart of Karen Creations.  She also has an Etsy shop. While there also take a look at some of her other creations.

The specific Global Genes items are here, here, here and here.

Disclosure: I purchased items from this store in early 2011 and have not received any compensation for writing this post. The opinions are my own, and she is a personal friend.


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