• 26 Sep 2020
    Transition ado-adulte All Day

    Plus d'infos

  • 14 Oct 2020
    34ème Edition de la Course du Cœur 08:00 to 17:00

    Plus d'infos

  • 15 Oct 2020
    Congrès Urgences 08:00 to 17:00

    Plus d'infos

  • 26 Sep - 17 Oct
  • 02 Nov - 19 Dec
  • 18 Jan - 31 May

Events

Initiation internship to genetics applied to PCD

Jan 27 2020

From October 1st to 3rd, 2013

Aim of the internship: get familiar with biology, genetics applied to PCD and the research. community

Debriefing:

Internship "TOUS CHERCHEURS" from October 1st to 3rd, 2013

With the support of the "Fondation Groupama pour la Santé", the ADCP was able again this year to offer to its members a biology practical traning to better understand the Primary Ciliary Dyskinesia.

The trainee was hled in MArseille, at the Luminy campus, within the INMED (Institut Neurobiologique de la Méditerrannée) in the enchanting creeks.

Marion Mathieu, in charge of the organization of the trainee, to the attention of the assocations of patients for "TOUS CHERCHEURS"-name of the college of DNA at Marseille- was able to provide us with a lot of teaching a little of her knowledge.

During 3 days, 9 trainees members of the ADCP, patients and parents have been immersed in the world of research, adopting a "look" and an approach of researcher to grasp and better understand PCD. This trainee also included a workshop on " respiratoru physiotherapy" hosted by Mr.Giovanetti from the CRCM of Marseille and member of the AMK (Association Mucoviscidose et Kinésithérapie).

A trainee that is part of the "therapeutic education of the patient"

  1. An exciting trip inside the human body: Cells, Chromosomes, DNA, Gene....How a genetic mutation occurs? What are the most common mutations for PCD? How we detect them? How do they reflect?...
  2. An exciting trip through experimentation: discovery of patience and precision of movement necessary to researcher. A twing of heart especially at the turn of an experiment where everyone could see appear his helix of DNA inside the tube
  3. An update on the current genetic research: the discovery of an explosion of advences in genetics (Soon, it will take only 3 months or lessto get results for several dozen genes tested!)
  4. An attractive meeting with a specialist of PCD: a privileged exchange that allows everyone to ask questions and get immediate answers
  5. Nice mettings and sharing of experiences between patients and parents

This traineealso highlighted a problem encountered by researchers at the European level: lobbies action of animal defencers is reflected for scientists by an increase of administrative procedures necessary to obtain agreement to work on laboratory animals. Conditions which compromises the progress of genetic research in general. The ADCP traced the problem to the Alliance Maladies Rares.

In conclusion, aquality trainee under the sign of convivialitty and good humor. A dense trainee, rich, exciting, which clarifies the scientific aspect of PCD, the scpecifities and constraints of research and contricutes to a better dialogue with physicians. A trainee that allows information on research advences and its difficulties.

For more informations., dowload the information sheet

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