LAL Solace Patient Community
LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
Uncategorized (21)
| Discussions | Replies | Latest Activity |
|---|---|---|
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 Mary Pruitt |
9 | Aug 24, 2018 |
My baby has CancerHi 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. |
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/LALI 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 Mary Pruitt |
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 Mary Pruitt |
Local MediaWe 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 Mary Pruitt |
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 Mary Pruitt |
6 |
Feb 26, 2012 Reply by Stephanie Dykes |
My Path to Being Diagnosed with CESDI 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 Mary Pruitt |
0 | Jan 13, 2012 |
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