Zellweger Syndrome ~ Peroxisomal Disorders ~ Single-Enzyme

 

Zellweger Baby Support Network




"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."  ~Margaret Mead



This organization was started by a small group of parents whose lives have been affected in some way by a rare disorder.  Our gift, in honor of our children, was to start this site, so we can help families and to raise awareness of these rare disorders. If your child has been diagnosed with Zellweger syndrome, a peroxisomal disorder or another rare disorder, we are here to help you.  You are not alone!

 

Our mission is to promote, advance, and improve awareness of Zellweger syndrome and other peroxisomal disorders, to assist, support, and aid, financially or otherwise, individuals and families affected by Zellweger syndrome.

 

We will help you learn more about these disorders.  We will provide emotional support, and we can help you to create a journal site for your child so that family and friends can be kept up to date on your child. We will pray with you and for you as you journey through life with your special angel.

 

We know this is a hard time for you; you want answers, information and comfort.  We want to help!  Some of us have been touched personally by a ZS child or just want to help those who have ZS children.  We are a safe place for you to let it all out and help others in their journey as well.  Please look through all the areas of the site and feel free to post on the message board to tell us a little about yourself and your family.  

 

The message board also has more information about other families and their stories and it is a great place to share experiences.

 

God bless you every day!!

 

Tell a Friend

 

 

Special thanks to Dan Lirette and In Christ Ministries for the video, Wings: A Tribute, below:

 


Non-profit organizational ID: NS012973

Tax ID: 20-3695622


Last updated: June 1, 2007