Pablo Ramírez Uribe

Storyteller | Teacher | Activist. 2018 Top 20 Colombian Leaders. Tipo raro con enfermedad rara (#PabloElRaro). He/him. Fortunately, for us all, hasn’t grown up.

[Pablo Ramírez Uribe @PabloRamirezU]

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

[Rare Disease Day @rarediseaseday]

Meet our 6 Regional Reps for Raising Youth Voices 2026!

These young leaders are joining us in Barcelona to help shape the future of the rare disease community!

Follow their organisations and stay tuned for event registrations. #RaisingYouthVoices2026

@PabloRamirezU

[Pablo Ramírez Uribe @PabloRamirezU]

An absolutely transformative day and event. From the bottom-iest of my heart, eternal thanks to @FondationIpsen, @eurordis, Rare Diseases International, @RareDiseases, and @rarediseaseday for putting their faith in the future #RareDiseaseDay

[Rare Disease Day @rarediseaseday]

Presented by @FondationIpsen Studio, the #RaisingYouthVoices2026 short film featuring never-before-seen content from our Regional Representatives is now live on our YouTube channel!

🎬 Watch it the full film: https://t.co/YmsLmclrFS

[Rare Disease Day @rarediseaseday]

It’s not easy to describe our first ever in-person event in ONE word, but we can try!

🎬 The #RaisingYouthVoices2026 short film drops this #RareDiseaseDay.

👉 Subscribe to our YouTube to be the first to watch: https://t.co/Jw3zBcoHIj

28|02|2026

[Rare Disease Day @rarediseaseday]

What happens when young rare disease advocates from across the world are given the space to speak, connect and lead?

👉 Read the #RaisingYouthVoices2026 article here: https://t.co/lGX8BjstAC

#RareDiseaseDay #PatientAdvocacy

[Rare Disease Day @rarediseaseday]

⏰ Here’s what some of our #RaisingYouthVoices2026 Regions Reps are planning for #RareDiseaseDay! With 11 days to go, find out how you can #GetInvolved in the campaign.

🔗 Learn more: https://t.co/TY50Ms9ZCl

[Rare Disease Day @rarediseaseday]

During the #RaisingYouthVoices2026 networking session we asked people to share a word that completes the #RareDiseaseDay campaign slogan from their perspective: 'More … than you can imagine'.

▶️ Catch-up now:https://t.co/LcyrOCWXSe

[Rare Disease Day @rarediseaseday]

Yesterday in Barcelona, we hosted our first-ever global event, Raising Youth Voices. 🌍

Six Regional Reps shared lived experiences on isolation, advocacy, and building inclusive, sustainable systems across diverse regions.

Watch now: https://t.co/LcyrOCWXSe

[Rare Disease Day @rarediseaseday]

Not attending in person?

Not to worry, the panel discussion will be livestreamed on YouTube.

🔔 Get notified: https://t.co/LcyrOCWXSe

#RaisingYouthVoices2026 #RareDiseaseDay

[Pablo Ramírez Uribe @PabloRamirezU]

About two months ago I was invited on behalf of Rare Disease International’s Youth Leadership Programme on @SciMagWebinars’s Redefining Connection: How young people are shaping the future of the rare disease community through technology and innovation with @YaminaHsaini, @RichHorgan, Shandra Trantham, and @ErikaGebelBerg. Quick teaser and link to the whole thing!

(And thank you @FondationIpsen, @aaas, and @ScienceMagazine!)

https://t.co/BhLLzvKs7R

[Pablo Ramírez Uribe @PabloRamirezU]

Prepping for the Rare Diseases International event that’s starting soon. Join in and watch live b/c otherwise the FOMO will be real

https://t.co/yuW9qIOkrw

[Pablo Ramírez Uribe @PabloRamirezU]

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)

[Pablo Ramírez Uribe @PabloRamirezU]

¿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!

https://t.co/iwqHbRPOsq

[Science Magazine @ScienceMagazine]

Join #ScienceWebinars for their next #ScienceAndLife broadcast on Thursday, 8 May at 12 p.m. ET ➡️ Redefining Connection: How young people are shaping the future of the rare disease community through technology and innovation.

Register today: https://t.co/9UlLWstZ1M

[Pablo Ramírez Uribe @PabloRamirezU]

@RichHorgan @YaminaHsaini and Shandra about to crush it with an amazing convo, register so that you don’t miss out!

[Science Magazine @ScienceMagazine]

Join #ScienceWebinars for their next #ScienceAndLife broadcast on Thursday, 8 May at 12 p.m. ET ➡️ Redefining Connection: How young people are shaping the future of the rare disease community through technology and innovation.

Register today: https://t.co/9UlLWstZ1M

[Science Webinars @SciMagWebinars]

Join #ScienceWebinars on Thu, May 8 at 12 PM ET to hear @PabloRamirezU, @RichHorgan, Shandra Trantham & Yamina Hsaini discuss how youth are shaping the rare disease community through tech & innovation.

Register:
https://t.co/RyrAtYur14

[Pablo Ramírez Uribe @PabloRamirezU]

Friends! A few days ago I was lucky enough to be part of this conversation courtesy of @aaas, @ScienceMagazine, @SciMagWebinars, and @FondationIpsen with some incredible people (it was also in a for-real filming studio which was wild??), and I’d love it if y’all were able to tune in, either at 12 pm EST when it goes live or afterwards when it’ll have been published as well!

Register here! https://t.co/cAgWnbPQXA

[Pablo Ramírez Uribe @PabloRamirezU]

It was the people, who made the World Orphan Drug Congress for me (which is why I can confirm that none of those smiles were fake or forced, the whole thing was a delight).

Something about meeting people with different areas of expertise, from all across this globe of ours, with different projects and ideas of interest, yet all working together towards making a better world for people living with rare diseases and all those around that ecosystem. How can one not feel incredibly lucky to get a glimpse of that over just one day?

And by ‘people’ I also mean all those living with one of the many conditions, diagnosed or undiagnosed, with a special support network or a lack thereof, because it is all of those ‘people’ that I could see were the north star and inspiration for the individuals pictured below (and the many more that I got to speak with and learn from). I’m lucky and thankful for Thursday for sure.

(Ok, sappy post over, back to our regular programming)

[Pablo Ramírez Uribe @PabloRamirezU]

We out here repping @APSType1 and Rare Disease International at the @orphanconf #worldorphandrugcongress

[Pablo Ramírez Uribe @PabloRamirezU]

Here we go for the (last day) of the @OrphanConf!

[Pablo Ramírez Uribe @PabloRamirezU]

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!

https://t.co/Q0GD3R8tEn