Signalise: a Dazzle4Rare Podcast

EP35: November TL;DR Feat. a Message for Menkes Awareness

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Episode notes

In this episode, Kimberly shares several important awareness events happening in November, such as International Epilepsy Awareness Month, National CRPS Awareness Month, and Colour the World Orange Day for Complex Regional Pain Syndrome. It also highlights days like World NET Cancer Day, International 15q Day, and Smith-Magenis Syndrome Awareness Day, among others. 

 

The podcast touches on news from Medics4Rare survey aiming to increase healthcare professional awareness of rare diseases. Dr. Lucy McKay's article in The Guardian addressing the need for improved approaches to rare diseases in healthcare education is also mentioned. Also discussed, the ERN ReConnect's efforts to translate clinical patient management flyer and much more. 

 

Links mentioned in the episode are below:

 

• Epilepsy Sparks Insights podcast
• The Disorder Channel website
• NFED Advocacy Day
• ERN Re-Connect 
• Rare Revolution Magazine interview with ERN Re-Connect
• NIHR study ideas 
  Education and Cognitive Development study

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