Living with a rare disease

Questionnaires d’aide au remplissage du dossier MDPH

La filière FIRENDO a élaboré ces questionnaires simples à remplir en format électronique ou papier pour vous aider, enfants comme adultes, à compléter votre dossier MDPH pour décrire vos difficultés.  

Interactive infographic of medico-social aids and devices

Click on the images to learn more about the devices and aids available for patients with rare endocrine diseases in France. By clicking on the “Health Care”, “Work”, “Everyday life”, “Transport” and “Education” banners, you will access a list of devices and aids related to.

Living witha rare disease

Health Care

SSR

Rehabilitation and follow-up care facilities

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Referring physician

Your privileged medical contact

Located in a nearby health facility, it follows your file and maintains close links with the expert centers (regional competence center or with the national reference center). You have according to its recommendations:

  • the authorization to consult other professionals in these expert centers: specialist endocrinologists, and also social workers, psychologists, etc.
  • the possibility of benefiting from certain disability-related devices.
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CR

Centre of reference

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CC

Centre of competences

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MDPH

Departmental facilities for disabled people

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Work

Occupational physician

Medical referent from your workplace

Provides an essential notice following your request to:

  • set up your workstation,
  • adapt your working hours or
  • Request for recognition of the status of disabled worker.
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AGFIPH

The Association for the management of the fund for the professional integration of disabled people

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CAP EMPLOI

Network supporting disabled workers towards a lasting employment contract or promoting their retention in employment

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Everyday life

CMP

Medico-psychological center

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CMPP

Medico-psycho-educational center

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SESSAD

Special education and home care service

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SSIAD

Home Nursing Services

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Transport

Ambulance

Contracted taxi

In agreement with National Social Security

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VSL

Small medical vehicle

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PAM

Transport service for people with disabilities / reduced mobility

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