EP20: Rare and Relevent TL;DR and a Personal Check-In with You

Welcome to Signalise: a Dazzle4Rare podcast. If this is your first or your fifth episode of Signalise, thanks for taking the time. You could be doing anything right now but you’re here and we appreciate that!

Every month is jam-packed with awareness days, events, and webinars. Wading through all the emails, alerts, and invitations from various organizations like Global Genes, Beacon, Genetic Alliance, and others can be a struggle. And let's not forget YOUR community - your wins, your good news!

We're introducing Rare and Relevant, your TL;DR for all things rare, associated, and noteworthy in a in a quick and easy format. If the term TL;DR is new to you, it stands for "Too Long; Didn't Read."

April is Sarcoidosis awareness month and there are some various national/international days as well. In this episode, Kerry Wong explains. 

The Caring Hands Sarcoidosis organization is encouraging individuals to share their stories with the world by sending their pictures, names, and narratives to SarcoidNetwork1@gmail.com or sharing on social media with the hashtag #MakeItVisible.

• Esophageal Cancer Awareness Month
  https://www.nhsinform.scot/illnesses-and-conditions/cancer/cancer-types-in-adults/oesophageal-cancer
• KIF1A Day
  http://kfi1a.org
  
  
•  Hydrocephalus Association Facebook "Breaking Barriers Men’s Talk"
  
• Hydocephalus Foundation in May "Bench to Bedside: How does a drug treatment get made?”
  
  
• United Leukodystrophy Foundation event “Caregiver Online Support Group."
  
  
• The Disability Badge Ban and Judy Dench
  
  
• CRISPR Therapy Cured a Woman's Genetic Disease
  
  
• Mom Diagnosed with End-Stage Uterine Cancer After Years of Misdiagnosis
  
  
• Sims 4 Medical Wearables for Players
  
  
• Samaritans Available 24 hours
  UK Tel. 116 123
• Text SHOUT to 85258 from anywhere in the UK, anytime, about any type of crisis.
  
  
• 112 is the only number you can use to access the emergency services in all EU countries.
  
  
   
• If you or someone you know is in crisis in the US, call 911 or go to the nearest emergency room. You can call 1-800-273-TALK (8255) to reach a 24-hour crisis center, or text MHA to 741741 at the Crisis Text Line. US residents only. 
  
  
• 112 is the only number you can use to access the emergency services in all EU countries.
   

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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

 

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