| Graz | Klin. Abteilung für pädiatrische Kardiologie (Center for children and adults) |
Univ.-Prof. Dr. med. univ. Daniela Baumgartner Medizinische Universität Graz Auenbruggerplatz 34/II, 8036 Graz |
Tel: +43 316 385 83669 |
| Innsbruck | Marfan Ambulanz für Kinder und Erwachsene (Center for children and adults) |
Dr. Thomas Karall Univ.-Klinik für Pädiatrie III Universitätsklinik Innsbruck Anichstraße 35, 6020 Innsbruck |
Tel: +43 50 504 234 81 oder: 43 512 504 23481 |
| Wien | Kinder Marfan Ambulanz am AKH Wien Universitätskliniken (Center for children only) |
Doz. Dr. Christiane Pees Währinger Gürtel 18-20, 1090 Wien |
Tel:+43 01 40400 3290 |
| Wien | Herzchirurgie, Krankenhaus Nord, Wien (Center for adults only) |
Prof. Dr. Martin Grabenwöger / Dr. Harald Pisarik Brünner Straße 68, 1210 Wien |
Tel: 01 27700 4308 |
Austria
There are 4 Marfan centers. One in Vienna has started in Spring of 2020.
Belgium (Wallonia)
In Belgium, there is no officially recognised Marfan expertise center. There are 4 places where Marfan Syndrome is well known and a diagnosis can be established, clinically and with the help of specialists and geneticists.
| Brussels | UCL- St Luc multidisciplinary expertise center for diagnosis and follow-up for children and adults. |
Prof. Th. Sluysmans (paediatric cardiology), Prof Revencu ( genetics), Dr. S. Pierard (adult cardiology). UCL- St Luc. | This has been set up about 10 years ago thanks to the patient association. All patients can be examined in one morning by a cardiologist, orthopaedic surgeon, ophthalmologist, geneticist and sometimes other specialists who then get together to discuss and set the path for follow-up. |
| Ghent | University of Ghent (UZGhent). The genetic lab that centralises all blood samples from all over Belgium for the genetical diagnosis. Although Ghent is in Flanders, the Wallonian organisation has very strong ties with them. |
Prof Julie DE BACKER (genetics and cardiology) and Prof Anne DE PAEPE (genetics) University of Ghent (UZGhent) |
Tel: – |
| Liège | CHU-Liège | Prof N. Sakalihasan, (cardiac surgery), Dr. E. Docampo Martinez (genetics) | Tel: – |
Denmark
There are 2 university hospitals where Marfan patients are followed.
| Aarhus | Center for Sjældne Sygdomme | Aarhus Universitetshospital Palle Juul-Jensens Boulevard 99 8200 Aarhus N |
Tel. +45 78451474 (10.00 – 12.00) E-mail: css@rm.dk |
| Copenhagen | Center for Sjældne Sygdomme | Afsnit 5004 Opgang 5, stuen Juliane Maries Vej 6 2100 København Ø |
Tel. + 45 35455003 (08.00 -15.00) E-mail: css-rigshospitalet.rigshospitalet@regionh.dk |
Finland
There are no specific Marfan-centers but the caring of Marfan patients is centered in the 5 University Hospitals. VASCERN in Finland is centered in The University Hospital of Helsinki.
| Helsinki (Helsingfors) | HYKS, Meilahti, Mejlans (The Central University Hospital of Helsinki) | ||
| Turku (Åbo) | KYS, (The University Hospital of Kuopio) | ||
| Oulo (Uleåborg) | OYKS, (The central University Hospital of Oulu) | ||
| Tampere (Tammerfors) | TAYS, (The University Hospital of Tampere) | ||
| Kuopio | KYS, (The University Hospital of Kuopio) | ||
France
There are 12 hospitals where Marfan patients are followed.
| Bordeaux | Service de Génétique Médicale, | Dr. Sophie Naudion C.H.U. Groupe Hospitalier Pellegrin Place Amélie Raba Léon 33000 Bordeaux |
Tel. 05 56 79 59 52 |
| Caen | Maladies vasculaires | Dr. Damien Laneelle C.H.U de la côte de Nacre Avenue de la Côte de Nacre 14033 Caen |
Tél. : 02 31 06 53 27 |
| Dijon | Centre de Génétique | Pr. Laurence Olivier-Faivre Hôpital d’Enfants – Pédiatrie 1 14, rue Gaffarel – BP 77908 21079 Dijon cedex |
Tél. : 03 80 29 53 13 |
| Lyon | Syndrome de Marfan et autres pathologies de la matrice extra-cellulaire |
Dr. Sophie Dupuis-Girod Hôpital Mère – Enfant – Bâtiment A1 – 4ème étage 59 Boulevard Pinel 69677 Bron Cedex |
Tél. : 04 27 85 65 25 |
| Lille | Institut Coeur Poumon | Dr. Pascal Delsart C.H.R.U. de Lille Boulevard du Pr Jules Leclerc 59037 Lille |
Tél. : 03 20 44 43 65 |
| Marseille | Service de Génétique Médicale (Consultation Marfan) |
Dr. Laurence Bal C.H.U. Hôpital de la Timone Enfants 264 rue Saint-Pierre 13385 Marseille cedex 5 |
Tél. : 04 91 38 67 49 ou Tél. : 04 91 38 46 04 |
| Nantes | Dr. Laurianne Le Gloan C.H.U. DE NANTES – Hôpital Nord Laennec Bd Jacques Monod Saint Herblain 44093 Nantes |
Tél. : 02 40 16 53 75 (cardiologie) ou Tél. :02 40 08 32 45 (génétique) |
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| Nancy | Service de Médecine Vasculaire | Pr. Stéphane Zuily C.H.R.U. de Nancy Institut Lorrain du Coeur et des Vaisseaux Rue du Morvan 54511 Vandoeuvre les Nancy cedex |
Tél. : 03 83 15 36 14 |
| Rennes | Service de Génétique | Pr. Sylvie Odent C.H.U. Hôpital Sud -Service de Génétique 16 Bd de Bulgarie – B.P. 90347 35203 Rennes cedex 2 |
Tél. : 02 99 26 67 44 Fax : 02 99 26 67 45 |
| Strasbourg | Maladies vasculaires | Pr. Dominique Stéphan C.H.U Nouvel hôpital civil 1 Place de L Hôpital 67000 Strasbourg |
Tél. : 03 69 55 06 36 ou 05 83 |
| Toulouse | Consultation multidisciplinaire pour le syndrome de Marfan et syndromes apparentés |
Dr. Yves Dulac/Dr. Thomas Edouard Hôpital des Enfants de Purpan 330, av. De Grande-Bretagne 31300 Toulouse |
Tél. : 05 34 55 85 49 |
| Reunion | Génétique médicale | Dr. Marie-Line Jacquemont C.H.U Saint Paul – Site GHSR Pôle femme-mère-enfant BP 350 97448 SAINT PIERRE Cedex |
Tél. : 02 62 35 91 47 |
Germany
There are 23 centres where Marfan patients are followed.
They can all be seen in the following list: Germany centres
Netherlands
There are 5 hospitals where Marfan patients are followed.
| Amsterdam | Coordinator adults: Dr. M.J.H. Baars (Clinical geneticist) Coordinator children: Dr. L.A. Menke (Pediatrician) Amsterdam UMC locatie AMC Meibergdreef 9 1105 AZ Amsterdam |
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| Nijmegen | . | Coordinator: Dr. M. Kempers (Clinical geneticist) RadboudUMC Geert Grooteplein Zuid 10 6525 GA Nijmegen |
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| Groningen | . | Coordinator: A. Medema Universitair Medisch Centrum Groningen (UMCG) Hanzeplein 1 9713 GZ Groningen |
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| Leiden | . | Coordinator: Dr. Y. Hilhorst-Hofstee (Clinical geneticist) Leids Universitair Medisch Centrum (LUMC) Albinusdreef 2 2333 ZA Leiden |
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| Maastricht | . | Coordinator: Dr. I.P.C. Krapels (Clinical geneticist) Maastricht Universitair Medisch Centrum+ (MUMC+) P. Debyelaan 25 6229 HX Maastricht |
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Slovakia
There are no recognised Marfan Syndrome centres. However, the Slovak Marfan Association has a list of doctors / specialists from regions dealing with patients with Marfan sy.
Sweden
In English / På engelska
In Sweden, there are no medical units that only target patients with Marfan’s syndrome or with suspicion of marfan or other similar conditions.
What we have are six regional Centers for Rare Diagnoses (CSD). They deal with all kinds of rare diagnoses and Marfan’s syndrome is one such.
You can contact CSD in your region to get guidance, referral and information as an individual, health care professional and other community initiatives in issues related to rare diagnoses. CSDs are thus not treatment units with health units that can be reached, but they can refer to the right place in the healthcare system.
Here is a list of all CSD https://csdsamverkan.se/kunskapslankar/2020-03-13-centrum-for-sallsynta-diagnoser
På svenska / In Swedish
I Sverige finns inte några medicinska enheter som enbart vänder sig till patienter med Marfans syndrom eller med misstanke om marfan eller andra liknande tillstånd.
Det vi har är sex stycken regionala Centrum för Sällsynta Diagnoser (CSD). De sysslar med alla typer av sällsynta diagnoser och Marfans syndrom är en sådan.
Man kan kontakta CSD i sin region för att få vägledning, hänvisning och information som enskild person, profession inom hälso- och sjukvården och andra samhällsinsatser i frågor som rör sällsynta diagnoser. CSD är alltså inte behandlande enheter med mottagningar som man kan komma till utan de hänvisar vidare till rätt ställe inom sjukvården.
Här finns en lista med alla landets CSD https://csdsamverkan.se/kunskapslankar/2020-03-13-centrum-for-sallsynta-diagnoser