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Asociación Corriendo con el Corazón por Hugo
AbbreviationCorriendo por Hugo
Formation30 April 2017; 6 years ago (2017-04-30)
Type nonprofit organization
Focus rare diseases
Location
Region served
Spain
Official language
Spanish
Director
Raúl Vara Ferrero
AffiliationsFederación Española de Enfermedades Raras
Website https://corriendoporhugo.com/

The Asociación Corriendo con el Corazón por Hugo (translated in English: Association Running with the Heart for Hugo), also Corriendo por Hugo is a nonprofit organization serving Spanish volunteers.

It is a civil association with legal personality CIF G49295686, apolitical and religious, which works in an organized way. [1]

It was created on 30 April 2017, a symbolic date when the Hug[ clarification needed] will not give birth to the association that will die at 18 months of a rare genetic malady, Menkes disease. Hugh's[ who?] parents, Eva and Raul Boizas Macías will create an association in their name which collects money for research on rare diseases, at the initiative of our seniors to contribute again at their times. [2]

During the COVID-19 pandemic, the association suffered a decrease in resources due to the cancellation of its activities. For this reason, the deputation of Zamora published a solidarity book titled Antologia para la esperanza, whose objective was to help the association financially. The collection obtained through the sale of the book was given entirely to the association. [3]

The current director of the organization is Raúl Vara Ferrero. [4] [5]

References

  1. ^ Asociación Corriendo con el Corazón por Hugo (2023). "28 Febrero Actividades Día Mundial de las Enfermedades Raras en Zamora". YouTube (in Spanish). Retrieved 4 January 2023.
  2. ^ ABC (26 January 2023). "La lucha de Hugo contra "las raras"" (in Spanish). Retrieved 4 January 2023.
  3. ^ Tuvozdigital (16 December 2021). "Presentada la publicación de relatos cortos "Antología para la Esperanza"" (in Spanish). Retrieved 4 January 2023.
  4. ^ Zamora24horas (2023). "Raúl Vara, premiado por la Asociación de Enfermedades Raras de la región" (in Spanish). Retrieved 4 January 2023.{{ cite web}}: CS1 maint: numeric names: authors list ( link)
  5. ^ El Español (2023). "Zamora organiza la carrera que más fondos recauda de toda España en favor de las enfermedades raras" (in Spanish). Retrieved 4 January 2023.
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