Rare hemorrhagic diseases ressources and competence center
The hemophilia and rare hemorrhagic diseases treatment center takes care of patients at risk of hemorrhage from infancy to adulthood. It provides clinical and biological monitoring as well as medical and surgical therapeutic care.
This rare diseases center supports patients :
- during hemostasis consultations and follow-up of patients with constitutional abnormalities of hemostasis ;
- during day hospitalizations for Minirin testing, evaluation of drug plasma half-lives ;
- during traditional hospitalizations for surgical procedures and hemorrhagic accidents ;
- specialized hemostasis advice for the various hospital departments (pediatric surgery, pediatric resuscitation, general and specialized pediatrics, maternity).
This reference center is affiliated with the Mhémo rare diseases healthcare network and the EuroBloodNet European reference network (ERN).
Medical
team
Annie Harroche
MD
Contact us
HTC Secretariat for hemostasis appointments
Phone. +33 (0)1 44 49 52 73
> Send an email to the secretariat
For the follow-up of known patients
– Pediatrics
Phone. +33 (0)1 44 49 57 44
> Send an email to the pediatric department
– Adult
Phone. +33 (0)1 44 49 54 16
> Send an email to the adult department
In case of emergency
- Hemophilia A and B
- Von Willebrand disease
- Fibrinogen deficiency
- Factor II deficiency
- Factor V deficiency
- Combined deficiency of factor V and factor VIII
- Factor VII deficiency
- Factor X deficiency
- Factor XI deficiency
- Factor XIII deficiency
- Combined vitamin K-dependent clotting factors deficiency
- Constitutional thrombopathy
- Constitutional thrombocytopenia
Dr Annie Harroche, doctor
Dr Laurent Frenzel, doctor
Dr Cécile Bally, doctor
Malika Makhlouf, nurse
Camille Grapin, psychologist
Marcelline Matingou, clinical researcher
Yoann Demay, clinical research associate of the Francecoag network
Nadine Dujardin, secretary
- Therapeutic education for constitutional hemorrhagic diseases (individual sessions for children and adults, group sessions for adolescents, group sessions for parents)
- Therapeutic education of children with extracardiac thrombotic pathology and treated with anti-vitamin K (AVK) and their parents
- Osteogenesis imperfecta (2017)
- Von Willebrand disease (in preparation)
- Clinical research: development of new therapeutics (molecules with extended half-life, emicizumab, anti-TFPI antibodies, antithrombin interfering RNA, gene therapy)
- Basic research: INSERM unit U 1163, Prof. Hermine, physiopathology of hemophilic arthropathy
Interuniversity diploma in pediatric rheumatology
Paris Descartes et Lyon I universities
University diploma in thrombosis and hemorrhage
Paris Descartes university
Diploma of specialized studies in pediatric surgery
Paris Descartes university
Interuniversity diploma in blood transfusion (DUTS)
Paris Descartes university
2021
– Serpins in Hemostasis as Therapeutic Targets for Bleeding or Thrombotic Disorders.
Elsa P Bianchini, Claire Auditeau, Mahita Razanakolona, Marc Vasse, Delphine Borgel
Front Cardiovasc Med, 2021 Jan 7, PMID: 33490121 PMCID: PMC7817699 DOI: 10.3389/fcvm.2020.622778
– Non-inhibitory antibodies inducing increased emicizumab clearance in a severe haemophilia A inhibitor patient.
Annie Harroche, Thibaud Sefiane, Maximilien Desvages, Delphine Borgel, Dominique Lasne, Caterina Casari, Ivan Peyron, Laurent Frenzel, Stéphanie Chhun, Peter J Lenting, Cécile Bally
Haematologica, 2021 Aug 1, PMID: 34011136 PMCID: PMC8327735 DOI: 10.3324/haematol.2021.278579
– Reappearance of inhibitor in a tolerized patient with severe haemophilia A during FVIII-free emicizumab therapy.
Ladislas Capdevila, Delphine Borgel, Dominique Lasne, Sebastien Lacroix-Desmazes, Maximilien Desvages, Sandrine Delignat, Cécile Bally, Laurent Frenzel, Annie Harroche
Haemophilia, 2021 Jul, PMID: 34004050 DOI: 10.1111/hae.14334
– Assessing bleeding risk in 18 children with Osteogenesis imperfecta.
Teddy Léguillier, Rémi Favier, Annie Harroche, Dominique Lasne, Christilla Bachelot-Loza, Delphine Borgel, Agathe Boussaroque, Tiffany Pascreau, Pauline Lallemant-Dudek et al.
Br J Haematol, 2021 Feb, PMID: 33475155 DOI: 10.1111/bjh.17303
– A retrospective analysis of discordances between international normalized ratio (INR) self-testing and INR laboratory testing in a pediatric patient population.
Joan Bitan, Fanny Bajolle, Annie Harroche, Pauline Cannet, Alice Braems, Sofiane Taleb, Damien Bonnet, Delphine Borgel, Dominique Lasne
Int J Lab Hematol, 2021 Dec, PMID: 34237187 DOI: 10.1111/ijlh.13652
– Role of oculocerebrorenal syndrome of Lowe (OCRL) protein in megakaryocyte maturation, platelet production and functions: a study in patients with Lowe syndrome.
Marion Egot, Dominique Lasne, Sonia Poirault-Chassac, Tristan Mirault, Dominique Pidard, Elise Dreano, Caroline Elie, Sophie Gandrille, Aurore Marchelli et al.
Br J Haematol, 2021 Mar, PMID: 33528045 DOI: 10.1111/bjh.17346
– Non-inhibitory antibodies inducing increased emicizumab clearance in a severe haemophilia A inhibitor patient.
Annie Harroche, Thibaud Sefiane, Maximilien Desvages, Delphine Borgel, Dominique Lasne, Caterina Casari, Ivan Peyron, Laurent Frenzel, Stéphanie Chhun, Peter J Lenting, Cécile Bally
Haematologica, 2021 Aug 1, PMID: 34011136 PMCID: PMC8327735 DOI: 10.3324/haematol.2021.278579
– A mutation in SLC37A4 causes a dominantly inherited congenital disorder of glycosylation characterized by liver dysfunction.
Bobby G Ng, Paulina Sosicka, François Fenaille, Annie Harroche, Sandrine Vuillaumier-Barrot, Mindy Porterfield, Zhi-Jie Xia, Shannon Wagner, Michael J Bamshad et al.
Am J Hum Genet, 2021 Jun 3, PMID: 33964207 PMCID: PMC8206404 DOI: 10.1016/j.ajhg.2021.04.013
– Compliance with Early Long-Term Prophylaxis Guidelines for Severe Hemophilia A.
Paul Saultier, Yves Guillaume, Virginie Demiguel, Claire Berger, Annie Borel-Derlon, Ségolène Claeyssens, Annie Harroche, Caroline Oudot, Anne Rafowicz, Marc Trossaert et al.
J Pediatr, 2021 Jul, PMID: 33676933 DOI: 10.1016/j.jpeds.2021.02.071
– Clinical phenotype, fibrinogen supplementation, and health-related quality of life in patients with afibrinogenemia.
Alessandro Casini, Sylvia von Mackensen, Cristina Santoro, Claudia Djambas Khayat, Meriem Belhani, Cecil Ross, Akbar Dorgalaleh, Arshi Naz, Ekrem Ünal et al.
Blood, 2021 Jun 3, PMID: 33512441 DOI: 10.1182/blood.2020009472
2020
– Emicizumab treatment: Impact on coagulation tests and biological monitoring of haemostasis according to clinical situations (BIMHO group proposals).
Christophe Nougier,Emmanuelle Jeanpierre,Catherine Ternisien,Valérie Proulle,Nathalie Hezard,Claire Pouplard,Dominique Lasne,With contributions from the Working Group on Biology of Haemorrhagic Disorders (BIMHO, Under the Aegis of GFHT)
Eur J Haematol, 2020 Dec, PMID: 32668090 DOI: 10.1111/ejh.13490
– Unique inflammatory signature in haemophilic arthropathy: miRNA changes due to interaction between blood and fibroblast-like synoviocytes.
Sandra Mignot, Nicolas Cagnard, Benoit Albaud, Cécile Bally, Justine Siavellis, Olivier Hermine, Laurent Frenzel
J Cell Mol Med, 2020 Dec, PMID: 33159500 PMCID: PMC7753994 DOI: 10.1111/jcmm.16068
– [GFHT proposals for management of discordance between the International normalized ratio measured in the laboratory and by self-testing].
Dominique Lasne, Ludovic Drouet, Jean-François Schved, Yves Gruel, Groupe de relecture
Ann Biol Clin (Paris), 2020 Dec 1, PMID: 33361016 DOI: 10.1684/abc.2020.1613
2018
– Preoperative Detailed Coagulation Tests Are Required in Patients With Noonan Syndrome.
Morice A, Harroche A, Cairet P, Khonsari RH.
J Oral Maxillofac Surg, 2018 Jul, PMID: 29362165 DOI: 10.1016/j.joms.2017.12.012
2017
– Type I interferon-mediated autoinflammation due to DNase II deficiency.
Rodero MP et al.
Nat Commun, 2017 Dec 19, PMID: 29259162 PMCID: PMC5736616 DOI: 10.1038/s41467-017-01932-3
– Long-term results of ankle arthrodesis in children and adolescents with haemophilia.
de l’Escalopier N, Badina A, Padovani JP, Harroche A, Frenzel L, Wicart P, Glorion C, Rothschild C.
Int Orthop, 2017 Aug, PMID: 28424853 DOI: 10.1007/s00264-017-3478-2
2016
– A Laboratory Phenotype/Genotype Correlation of 1167 French Patients From 670 Families With von Willebrand Disease: A New Epidemiologic Picture.
Veyradier A et al,
Medicine (Baltimore), 2016 Mar, PMID: 26986123 PMCID: PMC4839904 DOI: 10.1097/MD.0000000000003038
2015
– Long-term follow-up of children with haemophilia – low incidence of infections with central venous access devices.
Harroche A, Merckx J, Salvi N, Faivre J, Jacqmarcq O, Dazet D, Makhloufi M, Clairicia M, Torchet MF, Aouba A, Rothschild C.
Haemophilia, 2015 Jul, PMID: 25623936 DOI: 10.1111/hae.12638
– Batch recall of French plasma-derived products due to variant Creutzfeldt-Jakob disease risk: the psychological impact on haemophilic patients, changes in their therapeutic demands and behaviour and ethical considerations.
Aouba A, Harroche A, Frenzel L, Torchet MF, Rothschild C, François I, Mamzer-Bruneel MF. Haemophilia, 2015 Jan, PMID: 25545300 DOI: 10.1111/hae.12515
2013
– Spontaneous obturator internus muscle haematoma: a new unpublished cause of ilioipelvic pain in haemophilia.
Aouba A, Breton S, Harroche A, Sy-Bah D, Torchet MF, Frenzel L, Lasne D, Padovani JP, Odent T, Rothschild C.
Haemophilia, 2013 Jan, PMID: 22889018 DOI: 10.1111/j.1365-2516.2012.02929.x
Different types of hemophilia
RFI | 02.26.2021
How do you distinguish between the different types of hemophilia? How and when is the diagnosis made? Is the follow-up the same for all patients?
> Listen to the podcast
Rare diseases
RFI | 02.25.2021
The 14th edition of World Rare Diseases Day takes place on Sunday, February 28, 2021. This event aims to raise awareness among the general public and decision-makers about these little-known diseases and their impact on patients’ lives.
> Listen to the podcast
Diagnosis of hemophilia
RFI | 04.18.2019
On the occasion of World hemophilia day, we take a look at this blood disorder. This bleeding disorder puts patients at risk for both external and internal bleeding. While there is no cure for this disease, it can be treated to avoid the disabling consequences of repeated bleeding. How is hemophilia diagnosed? Is there an average age for diagnosis? Dr. Laurent Frenzel, hematologist and head of the center at the Necker-Enfants malades hospital. The Necker-Enfants malades hospital is twinned with the national blood transfusion center in Dakar, Senegal.
> Watch the replay
World hemophilia day
RFI |04.16.2019
On the occasion of World hemophilia day, we take a look at this blood disorder. This bleeding disorder puts patients at risk for both external and internal bleeding. While there is no cure for this disease, it can be treated to avoid the disabling consequences of repeated bleeding. How is hemophilia diagnosed? Are there different types of hemophilia? How does the disease impact daily life? What are the treatments?
> Listen to the podcast
Contact information
Necker-Enfants malades university hospital
> Adult hematology department
Hemophilia and hemorrhagic diseases treatment center
Adults and children
149 rue de Sèvres
75743 PARIS Cedex 15
> Welcome booklet – Adult patients
In Necker, the rare hemorrhagic diseases ressources and competence center in brief …
* data valid for 2022