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?...
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
Event registration announcement for a February 2026 conference in Barcelona featuring six diverse speakers: Liam, Maksym, Yu Su, Pablo, Vincent, and Stephanie.
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!)
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! lnkd.in/eU6JH7Me
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??)
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.
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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’
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Something about meeting people w/ different areas of expertise from across the globe w/ projects & ideas of interest, all working together towards making a better world for people living w/ rare diseases & those around that world. How can one not feel incredibly lucky to get a glimpse of that?
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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!
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
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
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
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...
Look at this country that fights for peace. Look at our comedians. Look at our chaos, at our pain, at our richness, at our spirit. You continue to live, Jaime.
I’m finally uploading the pages of that children’s picture book I made for you almost seven years ago now.
We miss you.
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
