The European Network for Rare and Congenital Anaemias (ENERCA) -instituted in 2002-, is the first network that aims to offer basic care to patients with rare anemias, and involves experts from 15 countries of the European Union. Spain leads this network that aims to coordinate and promote knowledge about the diagnosis and treatment of these pathologies, which are considered rare diseases because they affect less than five people per 10,000 inhabitants.
Dr. Joan Lluis Vives, director of ENERCA and head of the Unit of Erythropathology at Hospital Clinic in Barcelona, explained that with this network they want to get doctors from different countries in Europe to support each other when they come across the case of a patient suffering from a rare anemia who do not know how to handle.
In cases like these, ENERCA would allow sharing the knowledge of different medical professionals, so that the diagnosis and care provided to patients can be improved.
Experts estimate that around six percent of Europeans are affected by some rare disease. It is also known that approximately 1% of couples are at risk of having a child with a severe hemoglobin syndrome and, according to recent data, 250 million people worldwide suffer from thalassemia, one of the most common hereditary diseases. common in this group.
Rare anemias, great unknown
Antonio Cerrato, president of the Spanish Association for the Fight against Hemoglobinopathies and Thalassemias (ALHETA), points out that among the main difficulties faced by those affected is that health professionals themselves are unaware of the international protocols that are followed in the treatment of this disease. type of anemia.
For this reason, ALHETA advocates that doctors receive more complete training on these treatment guidelines, especially in Primary Care, whose professionals have an absolute ignorance of these diseases.
Cerrato has also pointed out that it is necessary to offer patients psychological and social support so that they can face their illness, since currently this type of help is not available in Spanish healthcare.
The patients, for their part, request the creation of a figure that coordinates the treatments of the patients, and thus make life easier for them and their families, because those affected are obliged to be aware of the need for revisions with different specialists -hepatologists, cardiologists, etcetera-, or take charge of the control of the dates in which they will need a transfusion, and not all patients or families are prepared to assume this responsibility.
SOURCE: EUROPE PRESS