{"id":1083,"date":"2024-05-23T17:09:13","date_gmt":"2024-05-23T17:09:13","guid":{"rendered":"https:\/\/www.para.malibellule.com\/?page_id=1083"},"modified":"2026-06-05T17:18:00","modified_gmt":"2026-06-05T15:18:00","slug":"la-strategie-nationale","status":"publish","type":"page","link":"https:\/\/fondationparalysiecerebrale.org\/en\/la-strategie-nationale\/","title":{"rendered":"Cerebral palsy national strategy"},"content":{"rendered":"
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A national action strategy for cerebral palsy cannot wait<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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A slow but necessary progression<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Seule fondation de recherche d\u00e9di\u00e9e \u00e0 cette pathologie, la Fondation Paralysie C\u00e9r\u00e9brale et ses partenaires se sont investis<\/span> depuis pr\u00e8s de 10 ans afin de porter la parole commune<\/strong> des personnes vivant avec une paralysie c\u00e9r\u00e9brale et des professionnels qui s\u2019engagent au quotidien pour faire avancer la recherche.<\/p>

The white book based on reflections is today a plea for the implementation of a national action strategy for cerebral palsy.<\/strong><\/p>

Rendez-vous sur notre cha\u00eene Youtube pour d\u00e9couvrir notre mini-s\u00e9rie p\u00e9dagogique autour de la strat\u00e9gie nationale de la paralysie c\u00e9r\u00e9brale\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Cr\u00e9ation d'une fili\u00e8re nationale d\u00e9di\u00e9e \u00e0 la paralysie c\u00e9r\u00e9brale<\/h3>

Le 24 juillet 2025, la ministre charg\u00e9e du Handicap a annonc\u00e9 la cr\u00e9ation d\u2019une fili\u00e8re nationale pour la paralysie c\u00e9r\u00e9brale, une premi\u00e8re en France.<\/p><\/div>

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Lancement de l'exp\u00e9rimentation Team&Co<\/h3>

Une nouvelle \u00e9tape vient d'\u00eatre franchie dans la prise en charge de la paralysie c\u00e9r\u00e9brale : pour la premi\u00e8re fois en France, la S\u00e9curit\u00e9 Sociale financer des stages de r\u00e9\u00e9ducation intensive avec une dimension essentielle et novatrice \u00e0 travers l\u2019implication de parents.<\/p><\/div>

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Publishing of the \u201cManifeste du Livre blanc de la paralysie c\u00e9r\u00e9brale\u201d and development of thematic proposal sheets<\/h3>

Summary of the white book on specific measures, this manifesto addresses how deeply necessary a cerebral palsy national action strategy is, with the need to turn primary needs into concrete measures.<\/p><\/div>

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HAS re-education recommendations<\/h3>

HAS (Haute Autorit\u00e9 de Sant\u00e9) published its recommendation \u201cRe-education and rehabilitation of the musculoskeletal system motor function of people diagnosed with cerebral palsy\u201d This recommendation, addressed to cerebral palsy patients, families, caregivers and health professionals, comes in the wake of works initiated by the Fondation Paralysie C\u00e9r\u00e9brale and its partners in research & in the study of patient expectations.<\/p><\/div>

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Unveiling of the \u201cCerebral Palsy White Book\u201d<\/h3>

The white book was unveiled on Cerebral Palsy International Day. Handed over to the State Secretary in charge of disabled people, it was also sent to various actors of the French Health Policy and presented to the media. \u201cL\u2019appel du 6 octobre 2021\u201d, launched by three young people (Julia Boivin, Matthieu Chatelin et Ga\u00eblle Drewnowski) is attached to it, in the name of the 125 000 people affected. It is a plea for the implementation of a national action strategy for cerebral palsy.<\/p><\/div>

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Signature of the \u201cCharte de la r\u00e9\u00e9ducation\/r\u00e9adaptation\u201d (Charter for re-education\/rehabilitation) <\/h3>

Following the \u201cESPaCe\u201d survey, a charter for re-education\/rehabilitation was written thanks to people living with cerebral palsy and professionals who worked together. It was signed in 2019 by Sophie Cluzel, State Secretary for people with disabilities.<\/p><\/div>

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Major National Survey \u201cESPaCe\u201d<\/h3>

The foundation launched a survey in order to support, through speech of people concerned in their daily life, a reflection to recommend best motor re-education best practices.<\/p><\/div>

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The Fondation, in partnership with family associations, learned societies, field professionals, launched this survey ESPaCe (National survey on care received, perceived needs, satisfaction level and expected improvement priorities as far as motor re-education is concerned by people affected with cerebral palsy and their families) in order to support a reflection on best practices in the field of current motor re-education.<\/p>

This national survey collected 1 010 answers to the questionnaire (354 children, 145 teenagers, 511 adults).<\/p>

Key elements emerging from this survey are:<\/p>