El Día de las Enfermedades Raras se lleva a cabo el último día de febrero de cada año. El principal objetivo del Día de las Enfermedades Raras es concienciar al público en general y a los responsables de la toma de decisiones sobre las enfermedades raras y su impacto en la vida de los pacientes.

El primer Día de las Enfermedades Raras fue lanzado por EURORDIS-Rare Diseases Europe y su Consejo de Alianzas Nacionales y se celebró en 2008 el 29 de febrero, una fecha ‘rara’ que ocurre solo una vez cada cuatro años. Desde entonces, se celebra el último día de febrero, un mes conocido por tener un número “raro” de días.

Crear conciencia sobre las enfermedades raras es muy importante porque 1 de cada 20 personas vivirá con una enfermedad rara en algún momento de su vida. A pesar de esto, no existe cura para la mayoría de las enfermedades raras y muchas no se diagnostican. El Día de las Enfermedades Raras mejora el conocimiento entre el público en general sobre las enfermedades raras al tiempo que anima a los investigadores y a los responsables de la toma de decisiones a abordar las necesidades de quienes viven con enfermedades raras.

Hay más de 300 millones de personas en todo el mundo que viven con una enfermedad rara; el 72% son de origen genético y de éstas, el 70% aparecen en la infancia. Juntos, a través de las fronteras y a través de las más de 6000 enfermedades raras, debemos trabajar hacia un acceso más equitativo al diagnóstico, tratamiento, atención y asistencia social.

El mensaje clave para el Día de las Enfermedades Raras 2021 es que: Rare is many. Rare is strong. Rare is proud.

Fuente:

Rare Disease Day. Link: Clic Aquí


30 comentarios

dil nedir · 12 marzo, 2022 a las 2:36 am

Hey there! I like your post, keep it going. You’re so professional at what you’re doing. Also check out my website, I’m posting some good stuff. okuryazarlık

Tilda Heydel · 2 abril, 2022 a las 1:27 am

Hi there! I like your post, keep sharing it. You’re so good at what you’re doing. Also check out my blog, I’m sharing some amazing content. forgot gmail password

Graig Sibel · 2 abril, 2022 a las 1:43 am

Hello there! I like your post, keep it up. You’re really professional at what you’re doing. Also check out my website, I’m sharing some good content. forgot my gmail password

Daryl Kibbe · 2 abril, 2022 a las 1:46 am

Hello there! I love your post, keep it going. You’re so good at what you’re doing. Also check out my website, I’m posting some good content. google account recovery

restore gmail account · 2 abril, 2022 a las 2:07 am

Hello there! I love your post, keep it up. You’re really professional at it. Also check out my blog, I’m sharing some good stuff. google account recovery phone number

google gmail recovery · 2 abril, 2022 a las 2:59 am

Hey there! I love your article, keep it going. You’re so good at what you’re doing. Also check out my website, I’m posting some good stuff. google account recovery phone number

gmail id recovery · 2 abril, 2022 a las 3:23 am

Hey there! I love your article, keep doing it. You’re so good at what you’re doing. Also check out my website, I’m sharing some amazing content. reset gmail account password

google account recovery page · 2 abril, 2022 a las 3:38 am

Hey there! I love your content, keep it going. You’re so good at what you’re doing. Also check out my blog, I’m sharing some good content. email account recovery

recover account · 2 abril, 2022 a las 3:51 am

Hey there! I like your content, keep it up. You’re really good at it. Also check out my blog, I’m posting some good content. restore gmail account

gmail recovery phone number · 2 abril, 2022 a las 3:54 am

Hey there! I like your post, keep doing it. You’re so good at it. Also check out my website, I’m posting some good stuff. recover gmail account password

email account recovery · 2 abril, 2022 a las 4:31 am

Hey there! I like your post, keep it going. You’re so professional at it. Also check out my blog, I’m sharing some good content. recover your gmail account

restore gmail account · 2 abril, 2022 a las 8:43 am

Hey there! I love your content, keep sharing it. You’re so good at it. Also check out my website, I’m posting some amazing content. recover password

gmail account recovery phone number · 2 abril, 2022 a las 8:55 am

Hello there! I like your content, keep it up. You’re so good at it. Also check out my blog, I’m sharing some good content. google gmail recovery

google help gmail recovery · 2 abril, 2022 a las 9:22 am

Hi there! I like your article, keep sharing it. You’re so professional at what you’re doing. Also check out my website, I’m posting some good stuff. recover your gmail account

gmail recovery email · 2 abril, 2022 a las 12:11 pm

Hello there! I love your content, keep doing it. You’re so professional at it. Also check out my blog, I’m sharing some amazing stuff. gmail account recovery

robux generator · 2 abril, 2022 a las 2:06 pm

Hey there! I like your content, keep it going. You’re really good at what you’re doing. Also check out my blog, I’m sharing some amazing stuff. ro bux

free robux generator no human verification · 2 abril, 2022 a las 2:29 pm

Hi there! I like your content, keep sharing it. You’re really professional at what you’re doing. Also check out my website, I’m posting some good content. earning robux

free robux generator · 2 abril, 2022 a las 2:45 pm

Hi there! I like your post, keep doing it. You’re so professional at what you’re doing. Also check out my website, I’m sharing some good stuff. free robux 2021

get free robux · 2 abril, 2022 a las 2:56 pm

Hey there! I love your article, keep it up. You’re so professional at what you’re doing. Also check out my blog, I’m sharing some amazing stuff. howto get free robux

free robux site · 2 abril, 2022 a las 2:58 pm

Hi there! I like your post, keep sharing it. You’re so good at it. Also check out my website, I’m sharing some amazing content. free robux site

get robux · 2 abril, 2022 a las 3:25 pm

Hey there! I like your post, keep it up. You’re really good at it. Also check out my blog, I’m posting some amazing content. earning robux

free robux no human verification · 2 abril, 2022 a las 5:33 pm

Hey there! I love your post, keep doing it. You’re so professional at it. Also check out my blog, I’m sharing some good stuff. free robux website

free robux generator no human verification · 2 abril, 2022 a las 5:38 pm

Hi there! I like your post, keep doing it. You’re so professional at it. Also check out my blog, I’m posting some good stuff. ro bux

free robux no human verification · 2 abril, 2022 a las 5:48 pm

Hello there! I love your article, keep sharing it. You’re really professional at it. Also check out my blog, I’m posting some good content. earning robux

free robux easy · 2 abril, 2022 a las 6:39 pm

Hello there! I like your post, keep sharing it. You’re really good at it. Also check out my blog, I’m posting some good content. robux generator

how to get free robux · 2 abril, 2022 a las 6:55 pm

Hello there! I love your article, keep doing it. You’re really professional at it. Also check out my website, I’m sharing some good stuff. free robux generator for roblox

dilin anlamı · 3 abril, 2022 a las 4:30 pm

Hello there! I like your article, keep it going. You’re so professional at it. Also check out my website, I’m posting some good content. dil nedir

dil · 3 abril, 2022 a las 4:46 pm

Hello there! I love your post, keep sharing it. You’re really professional at what you’re doing. Also check out my website, I’m sharing some good stuff. dil nedir tanımı

dilin tanımı · 3 abril, 2022 a las 6:23 pm

Hi there! I like your article, keep sharing it. You’re really good at what you’re doing. Also check out my website, I’m posting some good stuff. okuryazarlik

call of duty 3 highly compressed 500mb · 3 abril, 2022 a las 8:05 pm

Hello there! I love your post, keep it going. You’re really good at it. Also check out my blog, I’m posting some good stuff. call of duty highly compressed

Deja una respuesta

Marcador de posición del avatar

Tu dirección de correo electrónico no será publicada. Los campos obligatorios están marcados con *