LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
LAL SOLACE (Support Organization for Lysosomal Acid Lipase Deficiency - Advocacy, Care and Expertise) was created to bring LAL Deficiency patients and families together to share experiences, knowledge and compassion. We welcome both early onset (Wolman's Disease) and late onset (Cholesteryl Ester Storage Disease) patients and families!
Dr. Anthony Porto is a pediatric gastro-enterologist and hepatologist at Yale University. Feel free to ask him questions regarding LAL Deficiency: email@example.com
Would any patients or families be willing to share their stories with this wonderful organization? We are going to be teaming up with RareConnect in 2014! https://www.rareconnect.org/en
We would love to have YOUR stories to share on our page that will be on this site!
A GREAT New Resource for all our LAL Deficiency questions! Check it out!
***A NEW CLINICAL TRIAL FOR LATE ONSET LAL DEFICIENCY***
Synageva BioPharma Corp. has begun the ARISE Phase 3 clinical trial for late onset Lysosomal Acid Lipase (LAL) Deficiency/Cholesteryl Ester Storage Disease (CESD).
The ARISE (Acid Lipase Replacement Investigating Safety and Efficacy) clinical trial will evaluate the safety and efficacy of sebelipase alfa (SBC-102). Patients, age 4 and over, diagnosed with LAL Deficiency, may be eligible for enrollment.
Additional information on this trial and a list of participating trial sites may be found at http://www.clinicaltrials.gov/ct2/show/NCT01757184 or by contacting Synageva directly at firstname.lastname@example.org.
This is OUR Episode! I was able to go on Lifetime and talk about LAL Deficiency! Take a few minutes to watch!
You NOW can see LALSolace in YOUR language! Check out the bottom of the page for our new translation service!
Please check out the link above to find out more about the CLINICAL TRIAL for early onset Lysosomal Acid Lipase Deficiency...also known as Wolman's Disease!!!!
*Additional information about clinical trials can be found through the LAL Solace Clinical Trials Resource Center
New INFO Posted on Getting Tested for LAL Deficiency! Look under the "Clinical Trials" Tab
ATTENTION PERSIAN JEWISH COMMUNITY! If you or someone you know are part of the Persian Jewish Community, we desperately need your help! Please help us by taking part or sharing this survey. It will only take a few minutes and the information gathered is invaluable. Every little bit of information we gather will be used to further advance the research and treatment of Wolman's Disease and Cholesterol Ester Storage Disease. We are counting on you! Please click on this link: Survey Regarding Genetic Issues in Persian Jewish Community
I just have a question. My son who is 6 is going to be starting the treatments soon. We just have to fill out our part of the paper work and also make sure we have all blood work and the other stuff done. So my question is there anyone here that has…Continue
We still have plenty of bracelets to give away. We also have brochures now if anyone is interested in receiving one. You can message me your address and I will be happy to mail it to you. Let's spread awareness for LAL Deficiency! Continue
Hi everyone,Since April, I've been poked, prodded and passed from doctor to doctor like a game of hot potato in search of a diagnosis. Now, after being negative for HIV, Herpes, Infectious Diseases, Autoimmune Diseases, Wilson's Disease and being a…Continue