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DMurneuroscience.bsky.social

How could a rare neuromuscular disease be diagnosed at birth? Dr. Sam Mackenzie studies rare diseases like TANGO2 & DMD in his lab - he explains how model systems are informing what we understand about #raredisease#URochesterResearch#Neuroscienceyoutu.be/5TrnxPM9nsM

How could a rare neuromuscular disease be diagnosed at birth?
How could a rare neuromuscular disease be diagnosed at birth?

YouTube video by Del Monte Institute for Neuroscience

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PTpalermo.bsky.social

New video on Amelia’s YouTube channel all about her recent casting for new Ankle Foot Orthotics — fancy braces to help with neurological symptoms like spasticity. Casting Time for Amelia! #battendisease#casting#raredisease#spasticity#neurologyyoutube.com/shorts/e5FgM...

Casting Time for Amelia! #battendisease #casting #raredisease #spasticity #neurology
Casting Time for Amelia! #battendisease #casting #raredisease #spasticity #neurology

YouTube video by For Amelia Palermo (Batten Disease Awareness)

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Nnf-co.re

Pipeline release! nf-core/raredisease v2.2.0 - 2.2.0 - Dogmatix! Please see the changelog: https://github.com/nf-core/raredisease/releases/tag/2.2.0

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DUdarlingultra.bsky.social

Monatelang bei akuten Problemen auf einen Facharzttermin zu warten ist eine gute Versorgung?! Und das auch noch bei #raredisease?! Am Arsch!

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PTpalermo.bsky.social

Posted a new video on Amelia’s YouTube and TikTok pages all about her recent hospital stay and our subsequent efforts to keep her away from COVID! Amelia's Hospital Stay #shorts#battendisease#rarediseaseyoutube.com/shorts/Iii_I...

Amelia's Hospital Stay #shorts  #battendisease #raredisease
Amelia's Hospital Stay #shorts #battendisease #raredisease

YouTube video by For Amelia Palermo (Batten Disease Awareness)

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DUdarlingultra.bsky.social

Ach guck an. Da wurde ich doch glatt mal wieder vergessen. Ja,ich weiss,das ist keine Absicht. Aber ich bin #chronischkrank#raredisease#PEM#Medizinbrennt

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