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RARE INSIGHTS

Life Without the Sun - Xeroderma Pigmentosum

6/4/2018

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Picture

Picture
Photo by Alvaro Mata/Diario Las Americas

Author

Fátima Pérez
President and Founder of the XP Grupo Luz de Esperanza
Fatima founded Grupo Luz de Esperanza was established for the betterment of those individuals affected by Xeroderma Pigmentosum and their families.


Xeroderma Pigmentosum, known as XP, is a rare skin disease that literally keeps people in the dark. This life-threatening genetic disease is caused by a defect in the body’s ability to repair DNA cells damaged by ultraviolet (UV) rays. People with XP must avoid exposure to sunlight and some artificial lights which may cause skin cancers, blindness, painful blisters, and other medical problems. Children with XP and their families face many emotional and economic challenges.


XP Grupo Luz de Esperanza helps people with XP survive and thrive. We work to create worldwide XP awareness, especially in Spanish-speaking communities where resources and information are scarce.

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Tuesday, April 17th, 2018
3:00PM - 11:00 PM
PUERTO VALLARTA RESTAURANT SERVES UP PLATTERS OF HOPE!
Juan Rodriguez welcomes you to a fundraiser dinner and invites you to enjoy a variety of
authentic Mexican specialties: ceviche, fajitas, burritos, moles and their
signature dish of arroz con pollo...and much more to support the XP Grupo.  

20% of the proceeds will be donated to XP Grupo Luz de Esperanza
xplightofhopegroup.org
Puerto Vallarta Restaurant, 2385 Berlin Turnpike, Newington CT
Tel: 1-860- 667-8080

¿SE PUEDE USTED IMAGINAR LA VIDA SIN EL SOL? ​

Picture

Picture
Foto por Alvaro Mata/Diario Las Americas

Author

Fátima Pérez
Presidente y Fundadora de XP Grupo Luz de Esperanza
 "La organización XP Grupo Luz de Esperanza ha sido creada para mejorar la calidad de vida de aquellas personas afectadas con Xerodermia Pigmentosa y sus familiares."


 Xerodermia Pigmentosa, mejor conocida como XP, es una rara enfermedad de la piel que hace vivir a las personas afectadas en la oscuridad. Esta amenazante enfermedad genética es causada por un defecto en la habilidad del cuerpo de reparar las células del ADN dañadas por la radiación ultravioleta. Las personas con XP deben evadir la exposición a la luz solar o se arriesgan a contraer cánceres de la piel, ceguera y otras complicaciones. Los niños con XP y sus familiares se enfrentan a muchos desafíos en su diario vivir, en lo físico, económico, social y emocionalmente.

La fundación XP Grupo Luz de Esperanza ayuda a personas con XP a sobrevivir y mejorar su calidad de vida. Trabajamos para difundir conocimiento sobre XP alrededor del mundo, y en especial en las comunidades hispano parlante donde la información y los recursos son escasos.


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Martes, 17 de abril, 2018
3:00
PM - 11:00 PM
RESTAURANTE PUERTO VALLARTA
¡SERVIRÁ PLATOS DE ESPERANZA!


Juan Rodríguez les invita a una cena de recaudación de fondos para apoyar a el Grupo XP.
Usted disfrutará de deliciosos y auténticos platillos mexicanos: ceviche, fajitas, burritos, moles, y su original plato especial, arroz con pollo y mucho más...

Un 20% de la cantidad recaudada será donada a la fundación XP Grupo Luz de Esperanza
www.xpgrupoluzdeesperanza.org
Puerto Vallarta Restaurante, 2385 Berlin Turnpike, Newington CT
Tel: 1-860- 667-8080

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