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Information on Lysosomal Storage and MPS Disorders

Australia

Lysosomal Diseases Australia

Lysosomal Diseases Australia (LDA) is a national umbrella organization formed to represent the interests of people affected by lysosomal storage disorders, including their families and caregivers, to maximize resources available for support services, treatment and research.
www.lda.org.au

Europe

European Organisation for Rare Diseases (EURORDIS)

The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.

Eurordis’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
www.eurordis.org

European Platform for Patients' Organisations, Science and Industry (EPPOSI)

The European Platform for Patients' Organisations, Science and Industry (EPPOSI) is a EU patient-led partnership between patients, industry and academic science, founded in 1994 for the exchange of information and discussion of policies in EU human healthcare.

EPPOSI's primary mission is to establish a strong European alliance of patients' organisations, academic science, including clinicians, and industry jointly working on healthcare policies towards treatment and prevention of serious diseases.
www.epposi.org

National Information Center for Metabolic Disease (CLIMB)

UK's only dedicated organization to provide information and support on all metabolic diseases to children, adults, families and professionals.
http://www.climb.org.uk

USA

Global Organisation for Lysosomal Diseases (GOLD)

GOLD, the Global Organisation for Lysosomal Diseases, is an international collaboration of scientific and medical associations, patient groups, and commercial organisations dedicated to improving the lives of all patients with a lysosomal disease.
http://www.goldinfo.org/

Office of Rare Diseases at the National Institutes of Health

This website focuses on patients, general information and support groups.
http://rarediseases.info.nih.gov

Online Mendelian Inheritance in Man (OMIM)

A database providing a catalog of human genes and genetic disorders authored and edited at Johns Hopkins University Medical School and developed for the Internet by the National Center for Biotechnology Information (NCBI) and the National Library of Medicine (NLM).
www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Omim

PubMed

U.S. National Library of Medicine's free access to the MEDLINE database. This contains a vast collection of published medical information from scientific and medical journals.
www.ncbi.nlm.nih.gov/entrez/query.fcgi

The National Institutes of Health

The National Institutes of Health is the premiere medical research organization for the nation. Its mission is the pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend life and reduce the burdens of illness and disability. The latest information about scientific research, drug therapies, and clinical trials can be accessed via the organization's website.
www.nih.gov

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