iiinova — where your digital self keeps evolving

Pablo Ramirez Uribe @pabloramirezuribe.com · 28/02/2026

An absolutely transformative day and event. From the bottom-iest of my heart, eternal thanks to Fondation Ipsen, @eurordis.bsky.social, @rarediseasesint.bsky.social, @nordrare.bsky.social, and @rarediseaseday.bsky.social for putting their faith in the future #RareDiseaseDay youtu.be/J5HjbDGMFa0?...

youtu.be

Raising Youth Voices 2026 Short Film

YouTube video by Rare Disease Day

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Reposted by Pablo Ramirez Uribe

Rare Disease Day Official @rarediseaseday.bsky.social · 20/12/2025

📣 The Raising Youth Voices is a panel + networking session discussion designed to ensure that young people are included in the discussions shaping the future of rare disease policy. 👉 Register to attend in Barcelona here: go.rarediseaseday.org/voices #RaisingYouthVoices2026

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Reposted by Pablo Ramirez Uribe

Rare Disease Day Official @rarediseaseday.bsky.social · 11/12/2025

In-person registrations are now open for #RaisingYouthVoiceS2026 in Barcelona! 🎉 Join our Regional Representatives and other young leaders! 👉Register now: go.rarediseaseday.org/voices 🌍 Will also be livestreamed on YouTube. @nordrare.bsky.social @rarediseasesint.bsky.social

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Reposted by Pablo Ramirez Uribe

EURORDIS-Rare Diseases Europe @eurordis.bsky.social · 14/12/2025

In-person registration is now open for the #RaisingYouthVoices event in Barcelona!🎉 Meet the 2026 Regional Reps — Liam, Maksym, Stéphanie, Pablo, Vincent & Yu Su — bringing their lived experience and leadership to #RareDiseaseDay. Don’t miss this opportunity!🔗 go.eurordis.org/Eks6gD

Event registration announcement for a February 2026 conference in Barcelona featuring six diverse speakers: Liam, Maksym, Yu Su, Pablo, Vincent, and Stephanie.

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Pablo Ramirez Uribe @pabloramirezuribe.com · 08/12/2025

Thank you so much! 😊 I cannot wait to share a stage with five other young brilliant souls and their projects. Thank you @nordrare.bsky.social @eurordis.bsky.social @rarediseasesint.bsky.social for elevating youth voices in this way ❤️

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Pablo Ramirez Uribe @pabloramirezuribe.com · 22/05/2025

Prepping for the @rarediseasesint.bsky.social event that’s starting soon. Join in and watch live b/c otherwise the FOMO will be real us02web.zoom.us/webinar/regi...

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Pablo Ramirez Uribe @pabloramirezuribe.com · 22/05/2025

Prepping for the RARE DISEASES INTERNATIONAL event that’s starting soon. Join in and watch live b/c otherwise the FOMO will be real us02web.zoom.us/webinar/regi...

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Pablo Ramirez Uribe @pabloramirezuribe.com · 18/05/2025

Huge boarding ticket and even huge-r excitement for this amazing journey and experience in Geneva! (With a layover in Spain, of coure) Un pase de abordaje grandísimo, y unas ganas aún más grandes de disfrutar esta oportunidad tan increíble en Ginebra! (Claro que con escala en España)

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Pablo Ramirez Uribe @pabloramirezuribe.com · 18/05/2025

¿Cómo es esa vaina del Youth Leadership Programme de Rare Disease International el cual eligió a Pablo? ¡Mejor contarles antes de que se monte en un avión rumbo a Ginebra! youtu.be/uVXX1D7UF60

youtu.be

Líderes Jóvenes de Rare Disease International

YouTube video by Pablo el Raro

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Pablo Ramirez Uribe @pabloramirezuribe.com · 16/05/2025

The webinar has been rescheduled! If you registered then you’re all good for the 22nd, and if not then you have the chance to register and tune in (either live or later on when the stream finishes!)

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Pablo Ramirez Uribe @pabloramirezuribe.com · 06/05/2025

Friends! A few days ago I was lucky enough to be part of this conversation courtesy of @aaas.org, @science.org, and Fondation Ipsen with some incredible people (it was also in a for-real filming studio which was wild??)

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Pablo Ramirez Uribe @pabloramirezuribe.com · 26/04/2025

It was the people, who made the World Orphan Drug Congress for me (I promise none of those smiles were fake or forced, it was all a delight). [1/4]

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Pablo Ramirez Uribe @pabloramirezuribe.com · 24/04/2025

Here we go for the (last day) of the World Orphan Drug Congress!

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Reposted by Pablo Ramirez Uribe

Francisco Javier Vera Manzanares @franciscoactivista.bsky.social · 02/03/2025

Reusar lo que consumimos o utilizar los productos hasta el fin de su vida útil es una forma de resistir y actuar frente a un sistema obsoleto que degrada nuestro planeta. #ecoesperanza #ecohope #planeta #educaciónparalavida #ecoesperança #biodiversidad #consumismo

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Pablo Ramirez Uribe @pabloramirezuribe.com · 01/03/2025

Nuevo video de #PabloElRaro! Anoche pude hablar con Sergio Beltrán, director médico de Roche, sobre la experiencia de los pacientes con enfermedades raras. Estuvo riquísima la tertulia, así que disfruten también de ella! youtu.be/S6BW283J8_I?...

youtu.be

Sergio Beltrán y Pablo El Raro - Edición Enfermedades Raras

YouTube video by Pablo el Raro

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Pablo Ramirez Uribe @pabloramirezuribe.com · 28/02/2025

Thank you @rarediseasesint.bsky.social for this opportunity to work with and learn from brilliant and wonderful humans that are also committed to bettering this rare disease world of ours!

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Reposted by Pablo Ramirez Uribe

Space @redditspaceviewes.bsky.social · 14/11/2024

Pillars of Creation through MIRI | JWST

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Reposted by Pablo Ramirez Uribe

Sardonicus @sardonicus.eu · 15/11/2024

book
Mary W Shelley
He sprang from the cabin window as he said this upon th ice raft which lay close to the vessel. He was soon borne away by the waves and lost in darkness and distance.

Written in pen is
As he drifted away I could just make out his final words
"its ok if you call me 'Frankenstein' instead of 'Frankenstein's Monster'
I really don't mind"

The end

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Pablo Ramirez Uribe @pabloramirezuribe.com · 31/10/2024

Mi columna Ozymandias en El Espectador sobre la manifestación del Madison Square Garden. Dejo que decidan si hablo de la pro-Nazi de 1939 o la de este domingo www.elespectador.com/opinion/colu...

elespectador.com

Ozymandias

"Puede ser que vivan el resto de sus vidas con remordimiento, pidiendo perdón por haber caído en la trampa de este Trump”: Pablo Ramírez

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Pablo Ramirez Uribe @pabloramirezuribe.com · 08/08/2024

25 years without you, Jaime… what a thing. What a hurt. What a story. Billy Joel sings of the day the music died; 25 years ago now was the day the laughter died. But look at your legacy, Jaime.

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Pablo Ramirez Uribe @pabloramirezuribe.com · 26/03/2024

Sale un video más divertido (o al menos más relajado 😅) esta semana en #PabloElRaro. ¡Vean cómo edito los videos para el canal! #PabloElRaro Editando Los Videos! youtu.be/oyj3kTN1rqc

youtu.be

#PabloElRaro Editando Los Videos!

Pablo les muestra todo su proceso de editar los videos, con herramientas y todo!Productos mencionados:- https://www.elgato.com/uk/en/p/stream-deck-plus-black...

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Pablo Ramirez Uribe @pabloramirezuribe.com · 19/03/2024

El video de #PabloElRaro de esta semana no se trata de política, se trata de la decencia más básica, y de lo bajo que puede caer Donald Trump al burlarse del tartamudeo del presidente Joe Biden Cuando Donald Trump Se Burló De Las Discapacidades youtu.be/MxlZJQLAP-4

youtu.be

Cuando Donald Trump Se Burló De Las Discapacidades

Uno puede criticar o burlarse de las posiciones políticas de cualquier otra persona, pero hacerlo en relación a la discapacidad de alguien debería ser la lin...

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Reposted by Pablo Ramirez Uribe

Pablo Ramirez Uribe @pabloramirezuribe.com · 12/03/2024

El testimonio sobre las EnfermedadesRaras que compartí en la @oea_oficial , con subtítulos para la parte en inglés.The testimony I gave at the @oas_official on the topic of #RareDiseases, with subtitles for the bit in Spanish. youtu.be/N557HG4Lwkw

youtu.be

Testimonio de una Enfermedad Rara / Rare Disease Patient Testimony

Fui parte de una sesión del Consejo Permanente de la OEA (Organización de Estados Americanos) sobre las enfermedades raras. Acá el testimonio que le di a la ...

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Pablo Ramirez Uribe @pabloramirezuribe.com · 07/03/2024

And here I was thinking that I’d peaked in High School (it all goes downhill from here). Vean, y yo pensando que disque mis mejores años fueron en el bachillerato. Gracias @oea_oficial por ayudarnos ayer a amplificar las voces de la comunidad de #EnfermedadesRaras

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Pablo Ramirez Uribe @pabloramirezuribe.com · 06/03/2024

*Gob Bluth voice: I’ve made a huge mistake* 😅 (No, in all seriousness, THANK YOU to @oea_oficial for inviting me to speak on #RareDiseases. It’s needed and y’all are putting in the work 💪🏼)

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Pablo Ramirez Uribe @pabloramirezuribe.com · 05/03/2024

¡Mañana a las 3 nos vemos para hablar en la @OEA_oficial sobre las enfermedades raras! See you tomorrow at 3 at the @OAS_official to talk rare diseases! tinyurl.com/PabloOEA

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Pablo Ramirez Uribe @pabloramirezuribe.com · 01/03/2024

Bro I feel hella offish for having a domain handle. Is this what having power feels like.

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