• RespiRare

    RespiRare

    The rare respiratory diseases center was created in 2007 under the framework of the national plan for rare illnesses.
    Its mission is to gather and organize information on a national level about available treatments and research efforts concerning respiratory disorders.

  • A multi sites reference center

    A multi sites reference center

    Hôpital Armand Trousseau
    Hôpital Necker Enfants Malades
    Centre Hospitalier Intercommunal de Créteil
    Hôpital Universitaire Robert-Debré

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Welcome

European survey in 2014 on the management of PCD

Jan 25 2019

Share your experience on diagnostic tests of PCD

We would like to know more about the experience of the people who have been subjected to PCD tests.

The diagnostic of PCD can be difficult and many people have bad or good experiences resulting (in) to a positive or negative diagnosis.We would like to know more about the the experience of the diagnosis of PCD in order to improve the diagnostic method in people with this disease. We are interested in the view of people with this disease as the one of the healthy people.

The ERS (European Respiratory Society) funded a working group to develop recommandations for the diagnosis of patients with Primary Ciliary Dyskinesia (PCD) and it’s important that these recommendations reflect the opinion of patients. The people (or parents) who have been subjected to a PCD test are invited to respond to a short questionnaire to highlight the points they consider important for the developpement of these recommandations. If you wish to get an interview with a researcher to get mre information on the diagnosis of PCD, you can fill your contact details at the end of the questionnaire.

Link to the questionnaire: https://www.isurvey.soton.ac.uk/12543

 

PNDS DPI MSR

Déclarations publiques d’intérêts

PNDS Malformations pulmonaires congénitales de l'enfant

Prénom, NomDéclaration publique d'intérêts
Alexandra BenachiConsulter
Laureline BertelootConsulter
Arnaud BonnardConsulter
Sabah BoudjemaaConsulter
Sophie CollardeauConsulter
Pierrick CrosConsulter
Christophe DelacourtConsulter
Hubert Ducou le PointeConsulter
Clémence DufourConsulter
Chantal DurandConsulter
Louise GalmicheConsulter
Catherine GarelConsulter
Isabelle GibertiniConsulter
Guillaume GorincourConsulter
Frédéric HameuryConsulter
Jean-Marie JouannicConsulter
Naziha Khen-DunlopConsulter
Frédéric LavrandConsulter
Jérôme MassardierConsulter
Céline MenetreyConsulter
Nicolas MottetConsulter
Nicoleta PanaitConsulter
Cécile PicardConsulter
Christian PiolatConsulter
Guillaume PodevinConsulter
Léa RoditisConsulter
Laurent SalomonConsulter
Agnès SartorConsulter
Rony SfeirConsulter
Catherine Thong-VanhConsulter
Caroline ThumerelleConsulter
Anne-Sylvie ValatConsulter
Laurence WeissConsulter
Norbert WinerConsulter
Centres RespiRare Angers Besançon Bordeaux Brest Caen Clermont-Ferrand Créteil Dijon Grenoble Kremlin-Bicêtre Lille Limoges Lyon Marseille Montpellier Nancy Nantes Nice Paris - Trousseau Paris - Necker Paris - Cochin Paris - Robert Debré - Centre constitutif Paris - Robert Debré - Centre de compétences Poitiers Reims Rennes Rouen Saint Denis Saint Pierre Strasbourg Toulouse Tours

PNDS DPI DCP

Déclarations publiques d’intérêts

PNDS Dyskinésies ciliaires primitives de l'enfant

Prénom, NomDéclaration publique d'intérêts
Aline TamaletConsulter
Chiara SileoConsulter
Dominique GirardonConsulter
Hubert Ducou le PointeConsulter
Estelle EscudierConsulter
Guillaume ThouveninConsulter
Harriet CorvolConsulter
Isabelle CizeauConsulter
Isabelle HonoréConsulter
Isabelle PinConsulter
Jean-Christophe DubusConsulter
Jocelyne DerelleConsulter
Justin MichelConsulter
Katia BessaciConsulter
Laurence BassinetConsulter
Marc KoskasConsulter
Marie LegendreConsulter
Marie-Pierre RevelConsulter
Meriem RahmaniConsulter
Muriel LebourgeoisConsulter
Nicole BeydonConsulter
Pierre-Régis BurgelConsulter
Stéphanie WaninConsulter
Véronique HoudouinConsulter

PNDS DPI PID

Déclarations publiques d’intérêts

PNDS Pneumopathies interstitielles diffuses de l’enfant

Prénom, NomDéclaration publique d'intérêts
Rola Abou TaamConsulter
Serge AmselemConsulter
Tiphaine BihouéeConsulter
Céline BinetConsulter
Laureline BertelootConsulter
Déborah BlochConsulter
Michèle BouléConsulter
Aurélie ClavelConsulter
Annick ClementConsulter
Aurore CoulombConsulter
Pierrick CrosConsulter
Jacques de BlicConsulter
Jean-Christophe DubusConsulter
Hubert Ducou le PointeConsulter
Ralph EpaudConsulter
Michaël FayonConsulter
Laurent GouyaConsulter
Alice HadchouelConsulter
Véronique HoudouinConsulter
Marie LegendreConsulter
Nadia NathanConsulter
Meriem RahmaniConsulter
Philipe ReixConsulter
Jean-Luc RittiéConsulter
Chiara SileoConsulter
Aurélie TatopoulosConsulter
Caroline ThumerelleConsulter