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

HartOfKaren

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.

3 comments:

  1. Hi Jill, just stopping by to say how touching your blog is. Thanks so much for sharing. I have recently found your blog and am now following you, and will visit often. Please stop by my blog and perhaps you would like to follow me also. Have a wonderful day. Hugs, Chris
    http://chelencarter-retiredandlovingit.blogspot.ca/

    ReplyDelete
  2. Hi,

    I'm a new follower from Thumping Thursdays. Have a good week!

    xo,
    Gwen
    http://junior-executive.blogspot.com
    http://green-bellpepper.blogspot.com/

    ReplyDelete
  3. Hey,

    It’s Deedra from At My Counter. I came over to tell you I picked you for this blog award that I've joined in on! My post about it is here: http://atmycounter.blogspot.com/2013/01/the-liebster-award-2013.html

    I hope you participate; I can't wait to read some facts about you and get to know you better.

    Deedra

    ReplyDelete

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