EURORDIS, the European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations representing over 700 rare disease patient organisations in 63 countries. EURORDIS represents the voice of an estimated 30 million people living with a rare disease in Europe. Visit

Global Genes

Global Genes is a non-profit patient advocacy organization working to eliminate the challenges of rare disease by building awareness, educating the global community, and providing critical connections and resources that equip advocates to become activists for their disease. Numerous tools, resources and educational events can be found on the Global Genes. Visit

LAL-D Aware

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


The Spanish Association for Lysosomal Acid Lipase Deficiency (Asociación Española Déficit de Lipasa Ácida Lisosomal, AE LAL-D) consists of patients, relatives and friends of patients affected by LAL-D. Visit

MPS Society UK

The Society for Mucopolysaccharide Diseases (MPS Society) is the only registered UK charity providing professional support to individuals and families affected by MPS and related Lysosomal Storage Diseases throughout the UK. Visit


The National Organization for Rare Disorders (NORD) dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research, and patient services. It provides information and resources for patients with rare diseases as well as the medical professionals involved in their care. NORD also provides advocacy, and serves as a liaison between the rare disease patient community and the national institutions that have a direct impact on their health. Visit


RareConnect is a platform where rare disease patients, families and patient organisations can develop online communities and conversations across continents and languages. RareConnect is an initiative of EURORDIS. Visit


Vaincre Les Maladies Lysosomales was created by a group of parents of children suffering from lysosomal storage disorders in France. The actions of the Society follow three main themes: supporting research in finding a curative treatment; supporting the health services in improving the patients’ quality of life; and supporting families on a daily basis. Visit