Totanera Naca Eulalia Perez de Tudela Canovas today received the medal of the Order of Civil Merit.
The ceremony, presided over by Their Majesties King, has taken place in the Hall of Columns of the Royal Palace of Madrid.
During the same Don Felipe and Doņa Letizia imposed awards of the Order of Civil Merit to 38 people, including Naca Eulalia Perez de Tudela, in recognition of his personal commitment and social contribution.
The Order of Civil Merit, established by King Alfonso XIII aims to reward the merits of a civil nature that provide or have provided relevant services to the state, with extraordinary works, profitable initiatives or exemplary record in fulfilling his duties.
E. Naca Perez de Tudela has been dedicated for years and tirelessly to improve the lives of people with rare diseases and their families.
He was co-founder and president of the Association for Rare Diseases D'Genes (in Murcia), and currently chairs the Association of Families and Affected Lipodystrophies (AELIP) international.
Furthermore, 2013 was also co-founder of the Latin American Alliance for Rare Diseases (Aliber).
Moreover, being the president of D'Genes and AELIP, along with the respective directives, launched the Multidisciplinary Center "Celia Carrion Perez de Tudela".
His daughter Celia had one of these lipodystrophy;
more specifically, the so-called syndrome Berardinelli.
E. Naca Perez de Tudela has played a key role in boosting research lines in these diseases and also in raising awareness about rare diseases in Spain.
Together with her husband, Juan Carrion, president of the Spanish Federation for Rare Diseases, is undoubtedly a benchmark in this area.
Since the death of her daughter in March 2012 he redoubled his efforts and maintained its commitment to patients and families of rare diseases, always working to improve the quality of people living with one of these pathologies.
E. Naca Perez de Tudela, to receive this important recognition has launched a kiss to the sky in memory of his daughter Celia, and all the people he has met over the years who live with a rare disease and their daily struggle prove their worth and effort for the day to day.
