Portal de Totana
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The Plenary Session of the City Council of Totana last night unanimously approved the institutional adhesion to the Manifesto of the World Day of Lipodystrophies that is celebrated this Sunday, March 31, at the request of the International Association of Relatives and Patients of Lipodystrophies (AELIP).
The initiative included the creation of reference Units worldwide in the comprehensive care of patients with lipodystrophies.
Support the Reference Unit in Lipodistrofias located in University Hospital of Santiago de Compostela as CSUR (Center, Service and Reference Unit) in Spain for these pathologies.
It was also agreed that lipodystrophies should be considered as a social and health priority by different public and private institutions;
as well as the establishment of a map of experts-professionals in lipodystrophies worldwide, as well as the establishment of concrete measures to ensure equitable access to vital-use medicines for families with lipodystrophies, in particular human recombinant leptin.
It advocates the promotion of research in Lipodystrophies through the Centers, Services and Reference Units;
and increase the recognition of Lipodystrophy through education initiatives of the medical community and the general public, with the aim of diagnosing these patients early.
The manifesto intends to promote measures that guarantee the attention to people with Lipodystrophies that require their transfer to another Member State;
and to urge the Government of the nation to invest up to 3% of the Gross Domestic Product in health scientific research.
Likewise, we want to generate a collaborative action where all the agents involved, the public sector, the private sector, the citizens, the academic world, industry and patient associations converge - and through which patronage is favored through a system of incentives that make possible the sustainability and viability of research projects in Rare Diseases (ER).
Likewise, it supports the registry promoted by the European Consortium of Lipodystrophies, and the European network of clinical and basic groups that work in the field of lipodystrophies.
Finally, a protest banner will be placed during this weekend on the facade of the City Hall, and on March 31, 2019, the facade of the turquoise City Hall will be illuminated as a sign of awareness and visibility of the Lipodystrophies.
The Spanish Association of Lipodystrophies is an entity, nonprofit created in April 2012, in order to achieve a better quality of life both in people with lipodystrophies and in their families, in countries on five continents.
Since 2013, the World Lipodystrophy Day has been commemorated on March 31st, by means of awareness-raising and visibility activities to raise awareness of this infrequent pathology and to support those affected and families living with any type of Lipodystrophy in the world.
The plenary session of the Totana City Council agreed at the meeting held on December 27, 2012 to support the declaration of March 31 as World Lipodystrophy Day, a day of reference in which groups, associations, town halls, centers, professionals, scientific societies, groups of patients, citizens, institutions can participate actively in the organization and planning of joint activities that allow an approach and knowledge of the reality of lipodystrophies and allow to contribute to the improvement of public health and health services.
Source: Ayuntamiento de Totana
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