Amyloidosis in general


European Network of Centers for All Types of Amyloidosis

Amyloidosis in general

Historical developments in a nutshell


1639 – First description of a “sago spleen” by Nicholaus Fontanus

1789 – Description of a lardaceous liver by Antoine Portal. Later he also describes an enlarged liver in an 8-year-old boy with tuberculosis

1842 – “Lardaceous-gelatinous”-like firm greyish material in the liver of patients with tuberculosis, syphilis and mercury poisoning described by Karl Rokitansky

1856 – Probably the first description of a patient with “primary” amyloidosis by Samuel Wilks. In 1865 he described five similar cases

1872 – W. Adams and T.S. Dowse describe amyloid in patients with multiple myeloma

1932 – Benno Ostertag describes the first family with hereditary amyloidosis (of the kidneys)

1945 – Sheppard Siegal describes patients with familial benign paroxysmal peritonitis, currently known as familial Mediterranean fever (FMF). Amyloidosis is in this disease a frequent (in about 40% of cases) late complication.

1952 – Corine Andrade describes 74 patients, members of many families all originating from the same area around Povoa de Varzim, a small coast village in Portugal. All patients suffering from a familial amyloidotic polyneuropathy (FAP)

1956 – John Rukavina describes familial amyloid polyneuropathy in Indiana

1967 – First international Symposium on Amyloid and Amyloidosis, held in Groningen, organized by Enno Mandema, Luuk Ruinen, Jan Scholten and Alan Cohen

1967 – Jan Scholten describes in The Netherlands a Dutch kinship with hereditary amyloidotic polyneuropathy

1968 – Jouko Meretoja describes in Finland a hereditary form of systemic amyloidosis characterized by cornea lattice dystrophy, cutis laxa, and a cranial neuropathy

1968 – Shukuro Araki describes in Japan familial amyloidotic polyneuropathy

1969 – Maurice van Allen describes a family with renal amyloidosis in Iowa

1970 – Rune Andersson describes in Sweden familial amyloidotic polyneuropathy

1975 – David Warren describes a high frequency of carpal tunnel syndrome (CTS) in patients who are on longstanding dialysis. Gradually thereafter, since about 1984, it becomes clear that deposition of amyloid is the cause of the CTS as well as of other joint problems

1975 – John Wright and Evan Calkins describe a series of 100 autopsies of people of 60 years and older and they find in 10 of them amyloid, of whom in 2 much amyloid

1983 – Gibbons Cornwell again draws attention to the high frequency of amyloid in the heart (25%, in most of them also in lung and rectum) in a series of 85 successive autopsies of people of 80 years and older

1986 – The first international course on amyloidosis takes place in Groningen at the departure of Enno Mandema

1993 – Alan Cohen becomes editor-in-chief of a new medical journal called AMYLOID, The International Journal of Protein Folding Disorders

2002 – Official founding of the International Society of Amyloidosis (ISA) by Bob Kyle, the first president of the ISA. Since 1967 an informal structure of collaboration of amyloidologists existed who organized international symposiums and took care of the nomenclature

2010 – Per Westermark succeeds Alan Cohen as editor-in-chief of AMYLOID

2012 – Bouke Hazenberg and Johan Bijzet organize the XIIIth ISA-symposium, again in Groningen, 45 years after the first symposium

Amyloidosis in general

Historie in het UMCG

Medio jaren zestig in de vorige eeuw ontstond belangstelling voor amyloïdose bij de Groningse hoogleraar Interne Geneeskunde Enno Mandema. Samen met zijn medewerkers, de internist Jan Scholten en de biochemicus Luuk Ruinen, startte hij onderzoek naar deze aandoening. Dat resulteerde al snel in contact met de Amerikaanse onderzoeker en hoogleraar Alan Cohen. Gezamenlijk werd van 24 tot 28 september 1967 het eerste internationale symposium over Amyloïdose georganiseerd in Groningen (1). Dit voorzag in een behoefte, en werd een traditie. Nadien werden symposia op vele plaatsen ter wereld gehouden. Het 13e symposium werd in mei 2012 opnieuw in Groningen gehouden en in de zomer van 2020 zal het 17e symposium plaatsvinden in Barcelona (2).