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PATIENT RESOURCES FOR LAL-D (Lysosomal acid lipase deficiency)

OneSource - Personalized Patient Support from Alexion

OneSource™ is a complimentary, personalized patient support program offered by Alexion and tailored to the specific needs of people living with LAL-D


LAL-D Aware formerly known as SOLACE organization (Support Organization for LAL Deficiency – Advocacy, Care and Expertise) was created to bring LAL Deficiency patients and families together to share experiences, knowledge and compassion. SOLACE stands for Support Organization for LAL Deficiency – Advocacy, Care & Expertise. The SOLACE organization was created by parents whose children were diagnosed with Wolman Disease who realized there was a need for a caring support community. 

LAL-D Aware’s mission is to provide support for patients and families who have been affected by LAL Deficiency, a rare and devastating disease, and to educate and raise awareness to the medical community.

Childhood Liver Disease Research Network

The Childhood Liver Disease Research Network (ChiLDReN) is a collaborative team of doctors, nurses, research coordinators, medical facilities and patient support organizations. The ChiLDReN Network has clinical sites and research labs in the US and Canada, and also includes a research lab in London. These sites are working together to improve the lives of children and families dealing with rare liver diseases.

Global Genes

Global Genes is an organization started by friends, family and supporters of patients close to those affected by a rare disease. Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. The Global Genes mission is to help patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.


NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 300 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

LAL-D registry

LAL-D registry helps in improving the understanding of LAL-D, management of the disease, and monitoring quality of life.