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My baby has Cancer

Hi everybody, sorry I have been away for a long time but things took a turn for the worse and I don't mean for myself.  On March 21, 2013 w…

Started by Melissa Aguilar

1 Jan 26, 2014
Reply by Brett B.

Our First Giveaway!

We have LAL Solace bracelets! I will be happy to mail free bracelets to the 1st 10 people who respond! Just provide your name and address a…

Started by Brett Billmeyer

8 Oct 21, 2012
Reply by Brett Billmeyer

Later onset CESD- life goes on...

It is amazing how much difference a little bit of Lysosomal Acid Lipase can make.  There is such a huge difference between Wolmans and the…

Started by Karen deJong

9 Apr 16, 2012
Reply by Melissa Aguilar

My Status with CESD/LAL

I have been away for a while but am back! I have been sick and we are trying to find out what is wrong.  Besides my liver and spleen being…

Started by Melissa Aguilar

2 Apr 16, 2012
Reply by Melissa Aguilar

Survey....PLEASE RESPOND!!!

We need YOUR help...please take two minutes to fill out this short survey. The information will be used to help families like us find the i…

Started by Brett Billmeyer

2 Apr 13, 2012
Reply by Melissa Aguilar

Are you looking for a specialist for CESD?

Hi everyone, I found this Powerpoint presentation on my doctors' website.  He has 53 patients with CESD out of 300 (Late on-set-LAL Deficie…

Started by Melissa Aguilar

1 Feb 27, 2012
Reply by Brett Billmeyer

Local Media

We are working on getting something together for us all to send to our local media to get attention for rare disease day. Is anyone willing…

Started by Brett Billmeyer

1 Feb 26, 2012
Reply by Stephanie Dykes

Where did you look? Please help!

We would LOVE to hear from all our members on this one! There are some wonderful, helpful people that NEED our input! Before and during you…

Started by Brett Billmeyer

6 Feb 26, 2012
Reply by Stephanie Dykes

My Path to Being Diagnosed with CESD

I was diagnosed with CESD approximately 3 years ago at the age of 38. Almost 20 years ago, I found out that I had elevated AST and ALT enzy…

Started by Brett B.

5 Jan 24, 2012
Reply by Melissa Aguilar

Rare Disease Day Events!

http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/OOPDNewsArchive/ucm277194.htm This is a site for the FDA Rare D…

Started by Brett Billmeyer

0 Jan 13, 2012

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