Emergency: Rare Disease Personal Card

Question

Hello,
My daughter has CF. She has got an accident and was referred to the hospital by an ambulance. Fortunately conscious, she was able to direct the hospital staff especially concerning an injection of morphine.
Can you tell us if there is a formal document available to doctors in case of accident with loss of consciousness ?
My daughter refuses to remain hospitalized for further tests for fear that they provide not recommended care for her pathology.
Who can do this kind of document that she would keep close to be reassured?
People around her were helpless about this situation.
The accident is not related to her illness.
Thank you for kindly informing us.
Sincerely.

Answer

Hello,

Yes, as part of the National Plan for Rares Diseases 2005-2008, to improve coordination of care especially in emergency, the French Health Organization, closely with health professionals and involved patient’s associations, has developed since 2006 a “ Rare Disease Personal Card for Information and Care “.

This cards is designed as a plastic bag wallet to be easy to use. Confidential and covered by medical confidentiality, it is property of the patient.

It includes a "care" part, aimed at health professionals and an "information and advice" part for patients and their families and provides information about the patient, their disease and their treatment. The patient is invited to present his card to the health care professional for any urgent or not urgent consultation or care in order to improve care coordination.

Distributed since June 2006, to affected patients by CF Centers doctors and/or patient organizations, these cards are a tool for coordination of care between rare disease specialist doctors, other health professionals and the patient themself, as an actor of their health.

These cards are available for patients with healthcare professionals of centers accredited for the rare disease management.

The card is offered to all rare disease sick people. It is confidential and subject to confidentiality.

The card is, completed, explained, signed and issued by the doctor in charge of the rare disease follow up. Practitioners wishing cards for people they follow up, may ask it to the rare disease reference center whose contact details are on the order form (downloadable on the site: cf. link mentioned below).
The information contained in the maps will be integrated eventually into the personal medical record.
The facsimile maps and order forms are available on the site Orphanetwww.orpha.net, on the websites of patient’s organizations, of academic societies and of the French Ministry of Health. You will find all information about this card by clicking on the following link:

www.sante.gouv.fr/les-cartes-de-soins-et-d-informations-pour-les-personnes-atteintes-de-maladies-rares.html [side in French]

Hop this answer can help.
Best wishes
Gilles RAULT, MD, Roscoff CF Center

13.09.2015