The VASCERN Pregnancy and Family Planning Working Group (WG) is a transversal WG of VASCERN, coordinated by Professor Julie De Backer (Chair), Professor Guillaume Jondeau (Co-Chair) and Petra Borgards (ePAG representative), that deals with issues specifically related to pregnancy and the diseases of our five Rare Disease Working Groups.

The group meets every three months and liaises with the inter-ERN Transversal Working Group on Pregnancy and Family Planning. The aim is to stimulate research in the field of pregnancy and rare diseases, deliver specific Clinical Practice Guidelines for pregnancy planning and management, develop education and information for patient and healthcare professional and collect European-wide evidence on pregnancy management.

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BELGIUM

Ghent University Hospital, Ghent, Belgium

VASCERN HTAD European Reference Centre, Dept of Cardiology and Center for Medical Genetics 

Pregnancy WG Chair

Prof. Julie De BACKER
Cardiologist and clinical geneticist

HTAD-WG Chair

Cliniques universitaires Saint-Luc,  Brussels, Belgium

VASCERN VASCA European Reference Centre, Center for Vascular Anomalies

Prof. Laurence M. BOON
Plastic and Microsurgery Surgeon

Dr. Corinne HUBINONT
Obstetrician-Gynecologist

University Hospital of Antwerp, Antwerp, Belgium

VASCERN HTAD European Reference Centre, Center of Medical Genetics 

Prof. Bart LOEYS
Clinical cardiogeneticist

Dr. Aline VERSTRAETEN
Clinical geneticist

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DENMARK

Odense University Hospital, Odense, Denmark

VASCERN HHT European Reference Centre – OUH HHT Centre

Dr. Pernille M TØRRING
Clinical Geneticist

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FRANCE

AP-HPHôpital Bichat-Claude Bernard, Paris, France

VASCERN HTAD European Reference Centre, CRMR MarfanSyndrome and related disorders, department of cardiology

Pregnancy WG Co-Chair

Prof. Guillaume JONDEAU
Cardiologist, VASCERN Coordinator, HTAD-WG Co-Chair

Dr. Agnès BOURGEOIS-MOINE
Obstetrician-Gynecologist

CHU de Lyon HCL, GH Est-Hôpital Femme Mère Enfant
Lyon, France

VASCERN HHT European Reference Centre, CRMR Rendu-Osler

Dr. Olivier DUPUIS
Obstetrician-Gynecologist

HHT-WG

AP-HP, CHU Paris IdF Ouest, HEGP Hôpital Européen Georges Pompidou, Paris, France

VASCERN MSA European Reference Centre, Rare Vascular Diseases Reference Centre (CRMR)

Dr. Michael FRANK
Consultant Cardiologist

MSA-WG Chair

Prof. Alexandra BENACHI
Obstetrician-Gynecologist

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GERMANY

Petra BORGARDS

ePAG advocate for the Pregnancy WG

Essen University Hospital, Essen, Germany

VASCERN HHT European Reference Centre – Essen Center for Rare Diseases 

Dr. Freya DROEGE
ENT Physician

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NETHERLANDS

Radboud university medical center, Nijmegen, Netherlands

VASCERN VASCA European Reference Centre, Expert center for Hemangioma and Vascular Anomalies (Hecovan)

Dr. Carine VAN DER VLEUTEN
Dermatologist

Erasmus Medical Center, Rotterdam, The Netherlands

VASCERN HTAD European Reference Centre, Department of Clinical Genetics and Cardiology

Prof. Jolien ROOS-HESSELINK
Cardiologist

Nij Smellinghe hospital, Drachten, The Netherlands

VASCERN PPL European Reference Centre, Expert Center for lymphovascular medecine

Dr. Kirsten VAN DUINEN
Dermatologist

Dr. Janine DICKINSON
Dermatologist

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SWEDEN

Karolinska University Hospital, Stockholm, Sweden

VASCERN HTAD European Reference Centre, Department of Clinical Genetics

Dr. Edit NAGY
Cardiologist

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AUSTRIA

Affiliated Partner – Medical University Innsbruck, Innsbruck, Austria

Center for Genetic Aortopathies / Department of Cardiac Surgery

Dr. Julia DUMFARTH
Cardiac Surgeon

Recommendations from VASCERN’s Dos and Don’ts Factsheets

 

  • Pregnancy delivery and postpartum care in HHT

Breast feeding

  • Pregnancy delivery and postpartum care in HTAD

Before Pregnancy

During Pregnancy 

Delivery 

Postpartum care

  • Pregnancy delivery and postpartum care in vEDS (MSA WG)

Pregnancy

Delivery

Breastfeeding

  • Pregnancy delivery and postpartum care in PPL

Pregnancy and Lymphedema

 

Campens L, Baris L, Scott NS, Broberg CS, Bondue A, Jondeau G, Grewal J, Johnson MR, Hall R, De Backer J, Roos-Hesselink JW; ROPAC investigators group. Pregnancy outcome in thoracic aortic disease data from the Registry Of Pregnancy And Cardiac disease Heart. 2021 Jan 19:heartjnl-2020-318183. doi: 10.1136/heartjnl-2020-318183. Epub ahead of print. PMID: 33468574.

Regitz-Zagrosek V, Roos-Hesselink JW, Bauersachs J, Blomström-Lundqvist C, Cífková R, De Bonis M, Iung B, Johnson MR, Kintscher U, Kranke P, Lang IM, Morais J, Pieper PG, Presbitero P, Price S, Rosano GMC, Seeland U, Simoncini T, Swan L, Warnes CA; ESC Scientific Document Group. 2018 ESC Guidelines for the management of cardiovascular diseases during pregnancy. Eur Heart J. 2018 Sep 7;39(34):3165-3241. doi: 10.1093/eurheartj/ehy340. PMID: 30165544.

Videos

 

What to know before and during pregnancy in HTAD

This PoK video gives a comprehensive overview of the issues to consider for patients with HTAD considering pregnancy. The main considerations include risk of recurrence, risk of an aortic event (during pregnancy/delivery), risks to the foetus, risks of the medications used during pregnancy and risks of further progressive disease in the mother. Appropriate advice for each patient will need to be individualized, according to each patient’s circumstances and medical history, which is why HTAD patients should talk to their cardiologist when they are considering pregnancy.

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