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AELIP receives the heat of hundreds of muleños in the reading act of the Manifesto of the World Day of Lipodistrofias (26/03/2017)

More than eight hundred people dressed Friday night to the Association of Relatives and Affected Lipodistrofias (AELIP) in the event held in the square of the City of Mula, to read the Manifesto of the World Day of Lipodystrophies, which day Is commemorated on 31 March.

The event was attended by the president of AELIP, Naca Eulalia Pérez de Tudela, and other members of the board of the association, including the technical coordinator and executive director, Juan Carrión, who also addressed a few words to those present as President of the Spanish Federation of Rare Diseases (ERDF).

Also present were the first deputy mayor of Mula, Francisco Llamazares;

The Councilor for Social Services, Antonia Gabarrón;

And other members of the municipal corporation.

In addition, in addition to neighbors in a private capacity, there were representatives of the social fabric of the municipality.

With the reading of this manifesto AELIP raised the voice to claim, among other issues, the creation of units of reference worldwide in the comprehensive care of patients with these pathologies, that lipodystrophies are considered as a social and health priority by the different institutions The establishment of a map of global experts / lipodystrophy practitioners and the establishment of concrete measures to ensure equitable access to drugs of vital use for families with lipodystrophies, in particular human recombinant leptin.

Another of the needs raised from AELIP is the promotion of lipodystrophy research through the Centers, Services and Reference Units.

Precisely this year, in addition to the proposals already raised in previous editions of the campaign, the government of the nation is also urged to invest 3% of the Gross Domestic Product (GDP) in scientific health research.

Those responsible for reading the manifesto were the president of AELIP, along with the vice president of the association, Presentation Martínez, and Ana Belén Romero, member of the same and mother of a girl muleña affected by a type of lipodystrophy, who visibly moved closed The act and thanked the response and warmth shown by its neighbors.

Her daughter, Leticia, is affected by Berardinelli Lipodystrophy in subtype II, a pathology discovered by researchers in 2013 and named Celia's Encephalopathy.

Among those present were also the great-grandparents of Leticia, Antonio and Carmen, a muleño couple who lost their two children Antonio and Joaquin twenty years ago diagnosed with generalized lipodystrophy-seip Berardinelli's syndrome, although after their death they were correctly diagnosed as Celia encephalopathy, since this disease was discovered by a research team that since 2009 began to find out the causes of the rapid neurodegeneration manifested by a girl from Totana, Celia, and four other children from the Region of Murcia with The same symptoms.

This research, with which AELIP collaborates, continues today at the University Hospital of Santiago de Compostela and the Virgen de la Arrixaca University Hospital of Murcia.

In August of last year a new case, also deceased, was diagnosed in Israel.

At present, we are working on the prevention and early diagnosis of this disease.

Source: AELIP

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