If you have a rare disease or are caring for someone with a rare disease, you should first try to understand the circumstances of the situation, in order to assess the areas that need attention:
• Ability to function independently (both physically and cognitively);
• Complexity and status of patient’s health;
• Accessible living space;
• Need for medical devices at home;
• Financial resources;
• Availability of a supportive network to help provide care.
Primary information, which you should get in case you have a rare disease or are caring for someone with a rare disease:
• Patient’s medical history, including diagnosis, physician contact information, allergies and health history;
• Medication list;
• Insurance information;
• Legal documents.
In Portugal, the Directorate General of Health created the Rare Disease Card for patients, which contains relevant information, such as:
• Identification data (user number of National Health Service);
• Information regarding medical follow-up (name of the hospital attending physician that should be contacted in case of emergency and name of the health unit in which the patient is followed, responsible for the issuance of the card and which should also be contacted in case of emergency);
• Clinical specificities, namely pre-hospital and emergency hospital care.
The information on the card can be accessed through the Health Data Platform, which means that when the patient is admitted to a hospital, the attending physician can keep up to date with their clinical situation, having all the necessary information for the appropriate medical care, or the proper referral of the patient.
The Rare Disease Card for patients must be requested by the attending physician, after diagnostic confirmation, in a face-to-face consultation, through the Electronic Health Registration Platform.