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
***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
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