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European Network for Inherited Dislipidemias

A European Network for Inherited Dyslipidaemias (ENID) has been established by the EAS to prepare treatment recommendations for a range of inherited dyslipidaemias. These will be published as review articles in the society journal Atherosclerosis.

We plan to have regular updates of molecular diagnoses and treatment developments.

To support ENID, a network of active clinicians within Europe has been formed. They are prepared to be contacted for advice about the diagnosis and treatment of these patients. A list of the contact details of participating colleagues and their area of expertise can be found below.

A  series of teaching modules based on patient cases will, in the future, be available on the EAS website as part of a distant learning programme. This new initiative will supplement but not replace the involvement of the EAS in the joint European effort to develop and implement recommendations for prevention of cardiovascular disease.  

The ENID project is jointly chaired by Professor Ole Faergeman, Aarhus, Denmark and Professor Steve Humphries, London, UK with the collaboration of Dr Oliver Descamps,Haine Saint-Paul, Belgium.

 

TOPIC

EXPERT

E-MAIL

1.

Familial hypercholesterolaemia:

 

 

1a

LDL-receptor/apolipoprotein B defects – use of genetic testing in management:

Steve Humphries

Oliver Descamps

rmhaseh@ucl.ac.uk

descaoli@skynet.be

1b

FH – Adults  - Treatment

Eran Leitersdorf 

Emilio Ros

Fernando Civeira

Eric Sijbrands

eranl@hadassah.org.ill

eros@clinic.ub.es

civeira@unizar.es

e.sijbrands@erasmusmc.nl

1c

FH – Cascade testing

Joep Defesche

Steve Humphries

Pascale Benlian

j.defesche@amc.uva.nl

rmhaseh@ucl.ac.uk

pascale.benlian@sat.ap-hop-paris.fr

1d

FH- Children

Leiv Ose

Phil Lee

Jean Philippe Girardet

leiv.ose@rikshospitalet.no

philip.lee@uclh.org

jean-philippe.girardet@trs.ap-hop-paris.fr

1e

FH- Homozygous

Christiane Keller

Eric Bruckert

Norbert Weiss

 

 

 

Christiane.Keller@med.uni-muenchen.de

plasmaferesi@tin.it

eric.bruckert@psl.ap-hop-paris.fr

Norbert.Weiss@med.uni-muenchen.dee

2.

Recessive Hypercholesterolaemia

Stefano Bertolini

Rossi Naoumova

Marcello Arca

stefbert@unige.it

rossi.naoumova@csc.mrc.ac.uk

marcelloarca@libero.it

3.

Phytosterolaemia

Klaus von Bergmann

Alberico L. Catapano

Eric Bruckert

klaus.von_bergmann@ukb.uni-bonn.de

Alberico.Catapano@unimi.it

eric.bruckert@psl.ap-hop-paris.fr

4.

Cerebrotendinous xanthomatosis (CTX)

Eran Leitersdorf

Klaus von Bergmann

eranl@hadassah.org.il

klaus.von_Bergmann@ukb.uni-bonn.de

5.

High Lp(a)

Florian Kronenberg

Gerd Kostner

Gerd Utermann

kronenberg@gsf.de

gert.kostner@bkfug.kfunigraz.ac.at

gerd.utermann@uibk.ac.at

 

6.

Abetalipoproteinaemia

Fredrik Karpe

fredrik.karpe@lipid-metabolism.oxford.ac.uk

7.

Hypobetalipoproteinaemia

Alberico L. Catapano

Sigrid Fouchier

Trond Leren

Maurizio Averna

Patrizia Tarugi

Alberico.Catapano@unimi.it

s.w.fouchier@amc.uva.nl

trond.leren@rikshospitalet.no

avernam@unipa.it

tarugi@c220.unimo.it

8.

Dysbetalipoproteinaemia


Anton Stalenhoef

Eric Sijbrands

Alexandre Fredenrich

Philippe Moulin

A.Stalenhoef@AIG.umcn.nl

e.sijbrands@erasmusmc.nl

fredenrich.a@chu-nice.fr

philippe.moulin@chu-lyon.fr

9.

Familial combined hyperlipidaemia

Anton Stalenhoef

Gerd Schmitz

A.Stalenhoef@AIG.umcn.nl

gerd.schmitz@klinik.uni-regensburg.de

10.

Familial hypertriglyceridaemia

Bo Angelin

Gerd Schmitz

Kjetil Retterstøl

bo.angelin@medhs.ki.se

gerd.schmitz@klinik.uni-regensburg.de

kjetil.retterstol@rikshospitalet.no

11.

Chylomicronaemia (LPL or APOCII deficiency)

Pascale Benlian

Kjetil Retterstøl

Emilio Ros

Philippe Moulin

Michel Krempf

John Kastelein

Jan A Kuivenhoven

pascale.benlian@sat.ap-hop-paris.fr

kjetil.retterstol@rikshospitalet.no

eros@clinic.ub.es

philippe.moulin@chu-lyon.fr

mkrempf@sante.univ-nantes.fr

e.vandongen@amc.uva.nl

j.a.kuivenhoven@amc.uva.nl

12.

LCAT deficiency/Fish-eye disease

Guido Franceschini

Gerd Schmitz

Arnold von Eckardstein   

guido.franceschini@unimi.it

gerd.schmitz@klinik.uni-regensburg.de

arnold.voneckardstein@usz.ch

13.

Tangiers disease

Arnold von Eckardstein   

Gerd Schmitz

arnold.voneckardstein@usz.ch

gerd.schmitz@klinik.uni-regensburg.de

14.

Other forms of low HDL

Gerd Schmitz

Arnold von Eckardstein   

Federico Tatò

gerd.schmitz@klinik.uni-regensburg.de

arnold.voneckardstein@usz.ch

federico.tato@pk-i.med.uni-muenchen.de

15.

Severe, common as well as rare, secondary dyslipidaemias (diabetes, hypothyroidism, renal disease, pituitary disease, immunoglobulin excess, lipodystrophy, etc)

Ole Faergerman

Fredrik Karpe

ole.faergeman@aas.auh.dk

fredrik.karpe@lipid-metabolism.oxford.ac.uk

16.

Lipid storage diseases (CESD and Wolman disease, Niemann Pick, diseases, Gaucher's disease, etc.

Arnold von Eckardstein   

arnold.voneckardstein@usz.ch

17.

Pregnancy in women on lipid lowering medications

 

 

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