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We're bringing the benefits of genetic research to those who need it the most.

RARE GENOMICS NEWSLETTER November 2020

Stay updated on the latest services, collaborations, and opportunities we have. At the same time, we'll share ways you can help us advocate for the needs of rare disease families. With your input and support, we can find new ways to do more!

BridgeBio Awards Grant to Rare Genomics Institute to Help Rare Disease Patients
The Rare Genomics Institute (RG) today announced it has received a grant from BridgeBio Pharma, a clinical-stage biopharmaceutical company founded to discover, create, test, and deliver meaningful medicines for patients with genetic diseases and cancers with clear genetic drivers.
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BeHEARD Challenge Awards
We're delighted to announce the winners of the 2019-2020 BeHEARD (Helping Empower and Accelerate Research Discoveries) Rare Disease Science Challenge, a global competition that offers rare disease researchers, who traditionally have difficulty attracting funding, grants of the latest life science innovations and technologies. This unique biotechnology contest allows companies to contribute their technology to make a difference for the rare disease community.
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We understand being a parent of a child with a rare disease can be challenging, but it can also be a blessing. This image captures how it feels in your own words.
 

RG Blog Post

Parenting During the Pandemic: An Interview with Monica Coenraads of the Rett Syndrome Research Trust
Rett syndrome is a genetic brain disorder caused by mutations in the MECP2 gene. Rett typically affects females and symptoms usually become apparent between six and eighteen months after birth.
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RG Blog Post

Health Literacy and Rare Diseases
Have you heard of health literacy? It’s the ability to obtain, read, understand, and use health information to make decisions. Although Health Literacy Month has ended, the message is clear.
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Share your experience, get an Amazon gift card!
 
We want to provide the best experience for our website users and are always looking for ways to improve. If selected for a user interview, you'll receive a $5 Amazon gift card!
Take our survey!

RG Infographic 
Access Rare-Ed Infographics
DONATE TODAY!
Support Rare Genomics Institute with Every Amazon Purchase
 
You can now support Rare Genomics Institute each time you make a purchase through the Amazon app on your mobile phone! All you have to do is enable AmazonSmile, a program that donates 0.5% of your eligible purchases to us, at no extra cost. It’s an easy way to make every purchase count.
Follow these steps to turn on AmazonSmile on your iOS or Android device :
  • Open the Amazon shopping app on your mobile device
  • Go into the main menu and tap into “Settings”
  • Tap “AmazonSmile” and follow the on-screen instructions to complete the process
Thank you for supporting the important work we do.
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