Patient Story: Trendy Brothers
Visit These Helpful Websites

A website that provides emotional support and community for patients for LAL-D and those who care for them.

(NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

A patient-driven alliance of 710 rare disease patient organizations in 63 countries covering over 4000 diseases. Their mission is to build a strong pan-European community of patient organizations and people living with rare diseases, to be their voice at the European level, and to fight against the impact of rare diseases on their lives.

(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® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope—the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009, with just a few rare disease parent advocates and foundations, has since grown to over 500 global organizations.

Global registry dedicated to helping physicians improve management of LAL-D.

Patient Guides

Patient Symptom Tracker

A how-to guide to tracking your symptoms before and after LAL-D diagnosis.

Download PDF (1.3 MB)

The ABCs of LAL-D: For Children With LAL-D

A child’s guide to lysosomal acid lipase deficiency (LAL-D).

Download PDF (556.33 KB)

Patient Registry Brochure

How patients can help advance the knowledge of LAL-D.

Download PDF (115.52 KB)