Diseases Orphan or Rare
Rare diseases (RD) are a group of diseases of complex diagnosis and management, of a multisystemic component, that occasionally compromise the life of the patient, are incurable and not preventable and, in general, have a very low prevalence. The deficiencies in the records and models of diagnosis and care for these diseases affect the quality of life and affect how these patients can access all areas of social, occupational and cultural insertion.
Therefore, patients and their families experience one tolta psychosocial burden due to lack of support, lack of information about the disease and support networks, and lack of effective therapeutic hope; as well as later and less specific diagnoses.
In Latin America there are many deficiencies in access to adequate treatments and the protection of the population with these diseases, violating the human rights of patients.
For this reason, it is necessary to improve the exchange of information and share experiences on the situation of RD at the global and regional level, in order to protect the health and quality of life of those who suffer from this type of disease, since yes, added to all the barriers to care presented by these patients, andhe cost of treatment falls on them and their families, as a global consequence inequalities will be created and the gap between countries and even within the same segments of a country will increase even more.
This paper is the result of an investigation carried out to establish the main shortcomings that occur in the care of these patients in the region and how they impact their quality of life, but it also seeks to suggest some strategies that have been successful in other regions to achieve a more equitable and sustained access to the diagnosis and treatment of these patients.
What will you find in this document?
- Current situation of patients with rare diseases
- Progress and challenges in the legislative framework in the region
- Ethical aspects in the management of patients with Rare Diseases
- Diagnosis and screening: progress and needs
- Sustained access to treatment
- Need for clinical practice guidelines and comprehensive care routes
- Active participation of patients in decision-making
- Alternatives in financing orphan drugs
- Conclusions
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Contact
For more information
contact:
Paola Posada
Communications director
asistencia@senseandscience.co
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