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À titre d’exemple : une personne souffrant de protoporphyrie érythropoïétique sollicite auprès de l’administration l’autorisation d’installer sur son véhicule automobile un vitrage surteinté en dérogation à la réglementation interdisant les vitrages surteintés. L’existence de ce fichier spécifique évite à l’intéressé d’être en butte à une administration qui n’a pas connaissance de possibilités de dérogation et qui de ce fait met des mois voire plus à donner une réponse pourtant médicalement évidente. Les familles se trouvent généralement dém","articles":[{"num":"1er","extrait":"Il est procédé, dans les services de l’État et sous l’autorité et le contrôle du ministre de la santé à l’enregistrement de toutes les dérogations liées à une maladie rare ou orpheline s’agissant de formalités administratives. Ces informations font l’objet d’un traitement automatisé. 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aux personnes handicapées ou atteintes de maladies rares (première lecture).","synthese":"**Scrutin** sur la création d’un **répertoire des dérogations** et adaptations normatives pour les personnes **handicapées** ou atteintes de **maladies rares**. Le texte a été **adopté** le 4 avril 2019 par 64 voix **pour**, 3 **contre** et 0 **abstention**. **LAREM** et **LR** se sont positionnés **pour** ce vote. Le sujet porte sur l’organisation d’un outil centralisé facilitant l’accès à des **adaptations** spécifiques. Le résultat reflète un accord entre les groupes présents sur l’objectif de ce dispositif.","perFamille":{"LAREM":"a voté pour","LR":"a voté pour"},"source":"ollama/qwen3:14b"},"kesselArticles":[],"glossaire":[["motion de renvoi en commission","Une motion de renvoi en commission permet à l'Assemblée nationale de renvoyer un texte à une commission parlementaire pour examen. Elle permet de reporter le vote du texte ou d'en modifier le contenu. C'est une procédure utilisée pour approfondir l'analyse d'une proposition avant son adoption."],["engagement de responsabilité","L’article 49.3 permet au gouvernement de soumettre un projet de loi ou une mesure à l’Assemblée nationale sans débat ni vote, en engageant sa responsabilité. Cette procédure est utilisée pour adopter des textes urgents ou nécessaires à la mise en œuvre du programme gouvernemental. Elle relève d’une disposition législative spécifique du droit parlementaire français."],["commission mixte paritaire","La commission mixte paritaire est un organe composé de députés et de sénateurs chargé de négocier et de concilier les positions des deux chambres sur un texte législatif. Elle propose un compromis que les deux assemblées doivent ensuite approuver pour que le texte soit adopté."],["irrecevabilité financière","La procédure d'irrecevabilité financière permet à l'Assemblée nationale de vérifier si les dispositions financières d'un projet de loi sont conformes aux règles budgétaires ou législatives. Elle intervient avant le vote du texte pour identifier d'éventuelles incompatibilités. Cette étape vise à assurer la cohérence des mesures financières proposées."],["motion de rejet préalable","La motion de rejet préalable est un mécanisme permettant de contester l'admissibilité d'un projet de loi avant son examen en commission ou en séance plénière. Elle vise à bloquer son avancement en soulignant des défauts formels ou des incompatibilités avec les règles parlementaires. Elle est déposée par des députés et soumise à un vote."],["proposition de résolution","La proposition de résolution est un texte déposé par un ou plusieurs députés pour exprimer une position ou une recommandation sur un sujet d'actualité. Elle est débattue et votée en séance plénière, mais ne crée pas de texte juridique contraignant. Elle permet de mettre en lumière des enjeux ou de demander des mesures spécifiques."],["scrutin public ordinaire","Le scrutin public ordinaire est une procédure de vote utilisée à l'Assemblée nationale pour exprimer le vote des députés sur des textes ou des questions soumises à l'assemblée. Il se déroule en présence des députés et est compté de manière publique. Il sert à rendre compte du soutien ou de l'opposition à un projet de loi ou à une motion."],["scrutin public solennel","Le scrutin public solennel est une procédure de vote utilisée dans l'Assemblée nationale pour des questions importantes, comme des lois ou des amendements constitutionnels. Il se déroule en présence du public et suit un protocole particulier, marquant la gravité du sujet voté."],["navette parlementaire","La procédure permet à un texte législatif d'être transmis successivement entre les deux chambres du Parlement (Assemblée nationale et Sénat) pour être discuté, amendé et adopté. Elle vise à concilier les positions des députés et des sénateurs avant l'adoption finale."],["groupe parlementaire","Un groupe parlementaire est un ensemble de députés ou de sénateurs qui partagent des affinités politiques et collaborent pour défendre des positions communes. Il a une organisation interne avec des représentants élus et participe à la discussion et à la mise en œuvre des lois."],["article 44 alinéa 3","La procédure permet au Sénat de bloquer un texte adopté par l'Assemblée nationale. Elle s'inscrit dans le cadre des relations entre les deux chambres du Parlement. Elle vise à assurer un équilibre dans le processus législatif."],["député non-inscrit","Un député non-inscrit est un membre de l'Assemblée nationale qui ne fait partie d'aucun groupe parlementaire. Il participe aux débats et aux votes comme les autres députés, mais ne bénéficie pas des avantages ou des responsabilités liés à l'appartenance à un groupe. Son statut est temporaire et peut évoluer selon les circonstances."],["lecture définitive","La lecture définitive est la dernière étape de l’examen d’un texte par l’Assemblée nationale, où le projet de loi est adopté dans sa version finale. Elle marque la fin du processus de discussion et de modification du texte avant son promulgation."],["proposition de loi","Une proposition de loi est un texte législatif soumis à l'Assemblée nationale par un député, un groupe parlementaire, le gouvernement ou un comité d'enquête. Elle vise à modifier ou créer des dispositions juridiques et doit être débattue, amendée et votée par les députés. Son adoption dépend du résultat des votes en commission et en séance plénière."],["question préalable","La procédure permet à un député de contester la recevabilité d'une proposition de loi ou d'un amendement avant le débat. Elle vise à vérifier si le texte ou l'amendement respecte les règles parlementaires. Cela permet d'éviter les discussions sur des sujets hors des compétences de l'Assemblée."],["exposé des motifs","L'exposé des motifs est un document qui explique les raisons, les objectifs et le contexte d'une proposition de loi. Il est rédigé par le gouvernement ou un parlementaire et précise les enjeux et les principes qui justifient le texte proposé. Il accompagne le projet de loi lors de sa présentation à l'Assemblée nationale."],["motion de censure","La motion de censure est un procédé parlementaire permettant à l'Assemblée nationale d'exprimer un manque de confiance envers le gouvernement. Elle nécessite une majorité absolue des députés pour être adoptée. Si elle est votée, le gouvernement doit démissionner."],["nouvelle lecture","La procédure de « nouvelle lecture » correspond à une phase où le texte d’un projet de loi est examiné à nouveau, souvent après des amendements, pour vérifier sa conformité aux règles législatives. Elle permet de préciser ou d’ajuster le contenu du texte avant sa validation finale."],["première lecture","La première lecture est la première étape du débat parlementaire sur un projet de loi, lors de laquelle les députés examinent les principes généraux et le contenu global du texte. Elle permet d'ouvrir un débat sur l'idée du projet, sans entrer dans les détails techniques. Cette phase marque le début du processus législatif au sein de l'Assemblée nationale."],["exposé sommaire","L'exposé sommaire est un document rédigé par le gouvernement et présenté à l'Assemblée nationale pour expliquer les objectifs et les principes généraux d'un projet de loi. Il permet aux députés de comprendre le contenu essentiel de la proposition avant les débats détaillés. Ce texte est un élément formel de la procédure législative."],["sous-amendement","Le sous-amendement est une proposition de modification qui vise à ajuster un amendement déjà déposé. Il permet d'affiner ou de préciser un texte modifié sans reprendre l'ensemble de l'amendement initial. Il est utilisé lors des débats parlementaires pour affiner des dispositions législatives."],["séance publique","La séance publique est une réunion officielle de l'Assemblée nationale où les débats et les votes sur des textes législatifs ou des questions politiques ont lieu. Elle est ouverte au public et permet aux députés de discuter et de prendre des décisions en présence des citoyens."],["ordre du jour","L'ordre du jour est la liste des sujets à aborder lors d'une séance de l'Assemblée nationale. Il est établi par l'Assemblée elle-même, en tenant compte des propositions du gouvernement et des députés. Il structure le déroulement des débats et des votes."],["projet de loi","Un projet de loi est un texte proposé par le gouvernement pour créer, modifier ou supprimer une disposition légale. Il est soumis à l'Assemblée nationale, qui le débat et vote sur son adoption. Si approuvé, il entre en vigueur après publication."],["article 49.3","L’article 49.3 permet au gouvernement de soumettre un projet de loi ou une mesure à l’Assemblée nationale sans débat ni vote, en engageant sa responsabilité. Cette procédure est utilisée pour adopter des textes urgents ou nécessaires à la mise en œuvre du programme gouvernemental. Elle relève d’une disposition législative spécifique du droit parlementaire français."],["promulgation","La promulgation est la dernière étape de l'adoption d'une loi. Elle est réalisée par le chef de l'État après que le texte a été adopté par les deux chambres du Parlement. Elle permet à la loi de devenir officielle et applicable."],["vote bloqué","La procédure permet au Sénat de bloquer un texte adopté par l'Assemblée nationale. Elle s'inscrit dans le cadre des relations entre les deux chambres du Parlement. Elle vise à assurer un équilibre dans le processus législatif."],["amendement","Un amendement est une proposition de modification d'un texte législatif soumise par un député ou un sénateur. Il est examiné lors des débats parlementaires et peut être adopté, rejeté ou modifié par les membres de l'Assemblée."],["article 40","La procédure d'irrecevabilité financière permet à l'Assemblée nationale de vérifier si les dispositions financières d'un projet de loi sont conformes aux règles budgétaires ou législatives. Elle intervient avant le vote du texte pour identifier d'éventuelles incompatibilités. Cette étape vise à assurer la cohérence des mesures financières proposées."],["ordonnance","L'ordonnance est une procédure permettant de voter un texte législatif sans débat au sein de l'Assemblée nationale. Elle est adoptée par un comité de la chambre, après examen, et est soumise à l'approbation du gouvernement. Elle concerne des matières spécifiques définies par la Constitution."],["article 38","L'ordonnance est une procédure permettant de voter un texte législatif sans débat au sein de l'Assemblée nationale. Elle est adoptée par un comité de la chambre, après examen, et est soumise à l'approbation du gouvernement. Elle concerne des matières spécifiques définies par la Constitution."],["rapporteur","Un rapporteur est un député désigné par l'Assemblée nationale pour étudier un projet de loi ou un texte législatif. Il analyse le contenu, consulte des experts et prépare un rapport détaillé. Ce rapport est ensuite présenté à l'assemblée pour guider le débat et les votes."],["CMP","La commission mixte paritaire est un organe composé de députés et de sénateurs chargé de négocier et de concilier les positions des deux chambres sur un texte législatif. Elle propose un compromis que les deux assemblées doivent ensuite approuver pour que le texte soit adopté."]],"similar":[],"regardsExterieurs":[],"officialDocs":{"rapports":[{"uid":"RAPPANR5L15B1287","url":"https://www.assemblee-nationale.fr/dyn/15/rapports/cion-soc/l15b1287_rapport-fond.pdf","commission":"Affaires sociales","num":"1287","date":"2018-10-03","leg":15}]},"amendement":null,"amdtSynthese":null,"texteVotes":{"dossierRef":"DLR5L15N36520","articles":[{"key":"1","label":"Article premier","num":1,"vote":null,"amendements":[{"id":"VTANR5L15V1825","date":"2019-04-04","sort":"rejeté","titre":"l'amendement n° 7 de M. Vatin à l'article premier de la proposition de loi visant à la création d'un répertoire des maladies rares ou orphelines (première lecture).","pour":30,"contre":34,"abstention":0,"numero":"7","auteur":"M. Vatin","sousAmdt":false,"synthese":"Les personnes handicapées ou atteintes d’une maladie rare auraient pu, à titre expérimental pendant cinq ans, demander à une commission nationale une dérogation lorsqu’une norme leur imposerait des conséquences disproportionnées, cet amendement définissant aussi la maladie rare."}],"extrait":"Il est procédé, dans les services de l’État et sous l’autorité et le contrôle du ministre de la santé à l’enregistrement de toutes les dérogations liées à une maladie rare ou orpheline s’agissant de formalités administratives. Ces informations font l’objet d’un traitement automatisé. Un décret en Conseil d’État en fixe les modalités d’application.","extraitTexteUid":"PIONANR5L15B0833"}],"horsArticle":[],"compte":{"articles":0,"articlesListes":1,"amendements":1}},"amdtAbsence":null,"objMoyens":null,"recoExperts":null,"enClair":null,"bullets":[{"tag":"Maladie rare","art":"1er","txt":"Définit la <b>maladie rare</b> comme une maladie dont la prévalence est inférieure à <b>un cas pour 2 000 personnes</b> en population générale, à l’article du code de la santé publique qui permet d’utiliser à titre exceptionnel certains médicaments destinés à traiter des maladies graves ou rares (article L. 5121-12)."}],"bulletsSource":"claude","texteFinal":{"uid":"PIONANR5L15TAP0254","legislature":15,"titre":"Répertoire des maladies rares ou orphelines","titreLong":"proposition de loi visant à la création d'un répertoire des dérogations et adaptations normatives applicables aux personnes handicapées ou atteintes de maladies rares","dateDepot":"","dossierRef":"DLR5L15N36520","auteurs":[],"cosignataires":[],"cosignatairesCount":0,"type":"Proposition de loi","anUrl":"https://www.assemblee-nationale.fr/dyn/15/textes/PIONANR5L15TAP0254","dispositions":{"exposeMotifs":null,"articles":[{"num":"1er","extrait":"Le I de l’article L. 5121-12 du code de la santé publique est complété par un alinéa ainsi rédigé : « On entend par maladie rare une maladie dont la prévalence est inférieure à un cas pour 2 000 personnes en population générale. »","resume":"Définit, pour les autorisations temporaires d'utilisation de médicaments, la maladie rare comme celle dont la prévalence est inférieure à 1 cas pour 2 000 personnes en population générale."},{"num":"2","extrait":"(Supprimé)"}],"pdfUrl":"https://www.assemblee-nationale.fr/dyn/15/textes/l15t0254_texte-adopte-seance.pdf","pdfPages":null},"dispositionsVersion":6,"provenance":"an","provenanceFormule":", adoptée, par l'Assemblée nationale, visant à la création d'un répertoire des dérogations et adaptations normatives applicables aux personnes handicapées ou atteintes de maladies rares"},"seancesCr":[],"promulgation":null,"eli":null,"titreAmdt":null,"debatsExtraits":{"titre":"Répertoire des maladies rares ou orphelines","date":"2019-04-04","url":"","extraits":[],"explications":[{"orateur":"Mme Delphine Bagarry","groupe":"LREM","propos":"Initialement, monsieur le rapporteur, vous nous aviez invités à travailler sur la création d’un répertoire des maladies rares et orphelines, dont l’objet était de recenser celles qui permettraient de déroger aux règles communes."},{"orateur":"M. Philippe Berta","groupe":"MODEM","propos":"La proposition de loi est certes pavée de très bonnes intentions, mais la France est exemplaire, ce qui n’est pas toujours le cas, dans la gestion des maladies rares ; nos collègues étrangers me le rappellent presque chaque semaine et n’ont d’autre but que de copier le modèle que nous avons mis en place, notamment Orphanet et d’autres répertoires."},{"orateur":"Mme Patricia Lemoine","groupe":"UDI","propos":"Sur le fond, le dispositif initial de la présente proposition de loi visait à recenser les dérogations administratives bénéficiant aux personnes atteintes de maladies rares ou orphelines dans un fichier destiné aux administrations publiques."},{"orateur":"M. Michel Castellani","groupe":"LT","propos":"La présente proposition de loi, dont nous achevons enfin l’examen, a le mérite de faire ressurgir dans le débat les problèmes – auxquels nous ne pouvons rester sourds – rencontrés par de nombreux Français souffrant de maladies rares ou orphelines. J’ai pris note des arguments avancés par Mme la ministre des solidarités et de la santé au mois d’octobre dernier et de ceux avancés tout à l’heure par M."}]},"commissionAmdt":{"dossierRef":"DLR5L15N36520","leg":15,"counts":{"total":2,"adopte":0,"rejete":2,"tombe":0,"retire":0,"nonSoutenu":0,"irrecevable":0,"autre":0,"sansGroupe":0,"sansGroupeAdopte":0},"commissions":[{"prefixe":"CION-SOC","label":"Affaires sociales"}],"byGroupe":[{"groupeId":"LR","code":"LR","couleur":"#1C2EFA","n":2,"adoptes":0}],"divisions":[{"article":"ART. PREMIER","n":2,"adoptes":0}],"adoptes":[],"texteRefs":["PIONANR5L15B0833"]},"commReperes":{"fiches":380,"surTotal":439,"medianeAmendements":149,"medianeAdoptes":33},"amdtSeanceTotal":7,"amdtParArticle":{"art|1ER":{"article":"ART. PREMIER","commission":{"n":2,"adoptes":0},"seance":{"n":5,"adoptes":1},"textes":{"PIONANR5L15B0833":7}},"art|2":{"article":"ART. 2","commission":{"n":0,"adoptes":0},"seance":{"n":1,"adoptes":1},"textes":{"PIONANR5L15B0833":1}},"autre|TITRE":{"article":"TITRE","commission":{"n":0,"adoptes":0},"seance":{"n":1,"adoptes":1},"textes":{"PIONANR5L15B0833":1}}},"travauxComm":null,"rapportsDossier":[{"u":"RAPPANR5L15B1287","commission":"Commission des affaires sociales","date":"2018-10-03","num":"1287","leg":15,"type":"permanent","rapporteurs":[{"id":"PA720586","label":"Pierre Vatin"}]}]}}