This comprehensive program includes further neonatal screening , a medical care , early psychological and social patient , screening and information transmitters , the public information , awareness and training of health professionals, the provides genetic counseling and prenatal diagnosis , research.
This activity is essential to understand better the mechanisms of disease and develop new therapeutic methods to offer patients.
The priority is "to insure the equity for the access to diagnosis, the treatment and the care" people suffering from the disease, through the declension of ten strategic steps:
* Better knowledge of the epidemiology of the disease;
* Recognize the specificity of the diseases;
* Develop the information for the sick, the healthcare professionals and the general public
* Form the professionals to identify them better;
* Organize the screening and the access to the diagnostic tests;
* Improve the access to healthcare and the quality of care of the sick;
* Continue the effort in favour of orphan medicine;
* Answer the specific support needs of people with rare diseases and develop support for patients’ associations;
* Promote research and innovation on diseases , notably for treatments;
* Develop partnerships in the field of the diseases.
Regarding the strategic the step number 6, the defined objectives are:
* Set up reference centers for the treatment of the diseases;
* Structure, from these centers, an organization of the care allowing the patient to benefit from a coverage (care) as closely as possible to its needs;
* Align the organization of care device with the support device by health insurance and other compensation schemes ;
* Insure availability and support of orphan drugs and prevent the marketing decisions of certain health products.
The reference centers so set up have for missions of:
* Facilitate the diagnosis and define a strategy of therapeutic, psychological and social support;
* Define and spread management protocols;
* Coordinate the research and participate in epidemiological supervision;
* Participate in initiatives of training and information for the healthcare professionals, the patients and their families;
* Lead and coordinate the networks of sanitary and community health;
* Be special partners for guardianship and patients’ associations.
Source : Team UTD of CHU of Pointe-à-Pitre art. Mounlopital