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Global Genes
Leading patient advocacy organization working to eliminate the challenges of rare disease.
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Global Genes 13h
We are proud to partner with this giving season! Learn more about how they're helping support rare disease through their unique blend of coffee.
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Global Genes 14h
Easy listening: Chief Medical Officer for Kezar Life Sciences, comes on the to chat about how their experimental therapy for lupus nephritis may benefit a broad range of autoimmune diseases.
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Global Genes Nov 27
Make the most out of your & shopping by linking to your AmazonSmile account! Follow the instructions below to support rare disease families around the world.
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Global Genes Nov 26
Can't wait to attend the annual Rare Disease Innovation and Partnering Summit from next week. Our VP Strategic Advancement will be speaking on collecting & utilizing patient data. It's not too late to register here!
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Global Genes Nov 25
Here's your reminder to stay resilient and hopeful this inspiration Wednesday 💙
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Global Genes Nov 24
50% of children with a won't live to see their 5th birthday. Many of these deaths could be prevented through more research, more funding, & more advocacy. This starts with you. Donate today to help give hope to 400 million people worldwide.
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Global Genes Nov 24
. is now accepting nominations from rare disease patient advocacy organizations for the 2021 Young Investigator Draft! If you're a patient advocacy organization, learn more about how to nominate a researcher here:
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Global Genes Nov 23
Community member Monday: Meet Barby Ingle, whose journey with and multiple has taken her from head cheerleading and dance coach to advocating and supporting chronic patients in their journey to perform regular activities.
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Global Genes Nov 22
RARE in the Square is going virtual next year with the Conference and Biotech Showcase. Join us January 11-14, 2021 for RARE Beyond the Square, where we'll discuss the future of rare disease progress and innovation.
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Global Genes Nov 21
Easy listening: This week's focuses on Nell Meosky Luo, founder of . Hear how she was inspired through watching her mother attempt to organize her little brother's complicated and extensive records through his rare disease journey.
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Global Genes Nov 20
“It’s rare to say a cure has been found for any disease, but I think in this case, it’s perfectly accurate to say this.” Learn more about this revolutionary treatment for rare genetic condition inflammatory bowel disease!
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Global Genes Nov 20
Calling all foundation leaders! We want to hear from you. Be one of the first 100 to complete the survey below to receive a $25 Amazon Gift Card and be entered in an exclusive raffle to win a complimentary registration and swag bag to next year's Summit!
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Global Genes Nov 19
November is the month of giving. You can support rare disease through the programs below that inspire hope 💙
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Global Genes Nov 18
The Continuity of Care RARE Patient Impact Grant is now reopened! Apply before December 14 so that your organization can be considered for additional support in response to hardships from
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Global Genes Nov 18
How can networking with other members of the rare disease community become the key for innovating change? Read as nominee Christine Von Raesfeld chronicles her journey with becoming an advocate and connecting with other Champions of Hope.
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Global Genes Nov 17
Read about the silver linings that have emerged in healthcare from and other ways this year has impacted the community. Christian Rubio ( ) offers his insights!
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Global Genes Nov 17
Thank you to all of the attendees, sponsors, and RARE Champions of Hope who came out to show support and honor innovation this year!
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Global Genes Nov 17
Getting a diagnosis for a person with a rare disease takes an average of 7.3 years. Help connect advocates like Christine to shorten the diagnostic odyssey and make a difference in the lives of families everywhere. Visit or text RARE to 41444.
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Global Genes Nov 17
Looking forward to attending the annual Rare Disease Innovation and Partnering Summit with this year. Our VP of Strategic Advancement, Christian Rubio will be speaking- register now!
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Global Genes Nov 17
Sign up for 's one-hour webinar on November 18, 2020 at 3 p.m. ET about “The Role of Genetic Testing to Shorten the Diagnostic Odyssey” to better understanding how genetic testing can help lead to a diagnosis!
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