We out here working on the #RaisingYouthVoices2026 project with the Doctor Who soundtrack on blast @nordrare.bsky.social @eurordis.bsky.social @rarediseasesint.bsky.social

📣 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: https://go.rarediseaseday.org/voices #RaisingYouthVoices2026

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

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!🔗 https://go.eurordis.org/Eks6gD

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 ❤️

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...

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...

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)

¿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

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!)

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??)

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]

We out here repping @apstype1 and @rarediseasesinternational at the #worldorphandrugcongress

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

Akira Kurosawa Painted the Storyboards For Scenes in His Epic Films: Compare Canvas to Celluloid

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

Aldous Huxley to George Orwell: My Hellish Vision of the Future is Better Than Yours (1949)

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?...

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!

Pillars of Creation through MIRI | JWST

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...

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.

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

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

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

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

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

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

tag urself

*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 💪🏼)

¡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

¿Y esto para qué será? 🤔 #EnfermedadesRaras

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

Qué tal mi primer post disque para promover el #DiaDeLasEnfermedadesRaras #RareDiseaseDay con menos de una hora hasta que se acabe 😂 youtu.be/W7zMGlM-dVE