COMMUNITY

The AE LALD is made up of patients, relatives and friends of patients affected by LAL-D. The AE LALD was created as a result of the need to organise and join efforts given the low number of LAL-D cases diagnosed.

The Metabolic Unit of the Sant Joan de Déu Hospital began its journey over 40 years ago in the field of congenital errors of the metabolism (NDE). At present, the unit is made up of more than 15 specialists in different areas of neuropediatrics, gastroenterology and nutrition, psychology, pharmacy and biochemistry.

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Rare Commons is a research Project at the Sant Joan de Déu Hospital in Barcelona focused on the biomedical study of rare diseases that affect children. Users are grouped into private communities that bring families and physicians together to expand scientific knowledge about the illnesses in question.

The Committee for the Evaluation of Orphan Medicinal Products (EPA) was set up at the European Medicines Agency (EMA) in 1999 to promote and encourage research into the development of orphan medicinal products, thus emphasising the need to address rare diseases as a priority within the European Union.

The FECAMM Federation was established in 2004. FECAMM is made up of coordinated non-profit associations that advocate for rare diseases in Catalonia.