Signalise: a Dazzle4Rare Podcast

Please come back later today for links to the articles and social media profiles Kimberly mentioned in today’s episode. We’ll be making updates and corrections as needed.

Show Notes

In the latest episode of Signalise, Kimberly performs a speedrun of your Rare and Relevant TL;DR and happy news stories from our D4R community.

We've also added new awareness events for October, including the National Disability Employment Awareness Month, and share some exciting news from our friends at GOPI3KS. 

Resources

- October is National Disability Employment Awareness Month
[More info: DOl.gov]

- Genomics England has added a list of rare conditions for inclusion in their research study.
[www.genomicsengland.co.uk/news/genomics-england-announces-list-of-rare-conditions-to-be-included-in-world-leading-research-study]

- Lauren Pires from Mississauga is the first-ever Canadian recipient of the Invisible Disabilities Association’s “But You LOOK Good” Inspiration Award.

[https://www.modernmississauga.com/main/2023/9/27/mississauga-woman-named-first-ever-canadian-recipient-of-invisible-disabilities-association-award]

- Danielle from Daniellevates Instagram account

[https://www.instagram.com/p/Cx-lrE6sZs7]

- The Ehlers-Danlos Society announces its first cohort of the Centers & Networks of Excellence Program.

[www.ehlers-danlos.com/centers-networks-of-excellence-first-cohort-announced/]

 

- Lafora Disease now has unique ICD-10 Diagnostic Codes effective from October 1, 2023. [chelseashope.org/announcing-icd-10-codes-for-lafora-disease/]

- A study reveals that £60mn of public money was wasted on lost SEND tribunals in 2021-22. [Study: probonoeconomics.com/wasting-money-…]

- ACMCRN, LunaPBC, and Genetic Alliance 
[www.acmcrn.org/patient-registry]

- NIHR publishes its new Outcomes Framework.
[www.nihr.ac.uk/about-us/our-impact/outcomes-framework.htm]


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What is Signalise: a Dazzle4Rare Podcast?

The Dazzle4Rare event and Signalise podcast amplify the voices of rare disease and associated communities by sharing their stories, new, events, and more. Working together, we have strength in numbers, amplifying our critical messages.

We feature guests and discuss relevant topics for rare disease patients, caregivers, and those in the URCIID community.