The First Spanish Congress of Rare Anemias and Related Syndromes empowers patients and healthcare professionals

The Congress gathered around 100 people in Barcelona in September 20-21

October 12, 2013

First Spanish Congress of Rare Anemias and Related Syndromes

The affected families need information and a good medical care in order to manage the disease and minimize its impact over the quality of life of patients. That is one of the main reasons why initiatives such as the First Spanish Congress of Rare Anemias and Related Syndromes, which gathered around 100 people in Hospital de Sant Pau in Barcelona between September 20-21, are important. Interaction between patients and professionals is positive, empowering both of them and underlining the influence of patients as a collective. The voices of patients must be heard to offer a more efficient response to rare diseases from the medical community.

The Congress was organized by the Spanish Association Paroxysmal Nocturnal Hemoglobinuria (PNH), the Platform for Rare Diseases Doctor Robert Foundation of the Autonomous University of Barcelona and ENERCA. It was aimed at all those affected by rare anemia and their families, as well as medical health professionals who faced the diagnosis and monitoring of rare anemias. The purpose of this meeting was to provide information on the latest advances in the diagnosis and specialized clinical follow up of rare anemias. Particularly relevant aspects were those related to the prevention and treatment of rare anemias, iron overload due to blood transfusions, the clinical management of chelating agents, the use of drugs or biological modifiers of gene expression and bone marrow transplantation.

The debate involving patients and professionals during interactive sessions is one of the most intense moments of such meetings. One of the issues discussed during the Congress was the problem of heterogeneity among territories in the access to expensive treatments, such as Eculizumab against paroxysmal nocturnal haemoglobnuria. Attendants complained about the different conditions to access it within Spain, and suggested a more scientific approach to design personalized treatments based on results obtained in recent clinical trials.

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