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Global Genes @GlobalGenes

Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare

Joined November 2009
  • Tweets 26,952
  • Following 5,767
  • Followers 28,640
3,489 Photos and videos
As seen at #WeekInRARE, Jeff Levenson’s film “Life Through A Lens,” tells of a Hollywood photographer whose “life through a lens” gets turned upside down after he is diagnosed with a rare, debilitating genetic disease, APBD. 🎥 🌟 Watch this film now! go.globalgenes.org/4dMkMw5
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During our Health Equity Forum at Week in RARE 2024, Suzanne Edison led a workshop for writing to your rare disease & crafting a mask that shows the super powers you with that disease. Today, we’re sharing attendee Amber Denton’s letter to NBIA ✉️✒️ globalgenes.org/story/dear-n…
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We love to hear about the victories of our Global Advocacy Alliance members! Today, we’re celebrating Castleman Disease Collaborative Network’s successful summit that took place this past July. Read about their efforts below! 🎉 globalgenes.org/blog/castlem… #GAASuccessStories
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This year, Global Genes partnered with Brad Thompson, M.A., NCC, LPC-S to host a caregivers support program aimed at helping caregivers take care of themselves and their mental health! Read about Ana's experience on our blog 💭 go.globalgenes.org/3Y0HoD6 #CareAboutRare
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This past August, Chris Hopkins, CEO of @DevinebioRare, sat down to talk about how the company works with patient organizations, how far it will advance programs, and its exit strategy 🌟🎧: #RARECast globalgenes.org/raredaily/pu…
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🩵 In recognition of World Mental Health Day, we want to highlight the importance of mental health. We know that during stressful times, finding resources can be tough, so we've gathered some to help improve overall well-being. View our resources here >> go.globalgenes.org/3Ydu1Rm
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Exciting news – we’ve launched our RAREly Told StoriesToolkit, presented by Global Genes and The Disorder Channel! If you’ve wanted to make your own rare disease documentary, this toolkit is the place to start 📹 go.globalgenes.org/4epu5Df #RARElyToldStories #ShareYourStory
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As seen at #WeekInRARE, Lori Renna Linton's “Pass Me The Potatoes, Please,” focuses on her journey with HSP & harnessing the power of community for a creative fundraising campaign that involves filling your pants with potatoes. Watch her film now! 🥔 globalgenes.org/video/pass-m…
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Global Genes retweeted
BDSRA Foundation@BDSRA
7 Oct 2024
Q&A: In this edition, BDSRA Database Manager Noah Siedman analyzes the sessions he attended at the @GlobalGenes RARE Advocacy Summit, his message to the audience during the Rare Siblings panel, and his overall takeaways and how they can help the community: ow.ly/SwXh50TCFQ4
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Monica Coenraads has played a critical role in catalyzing development of therapies to treat Rett Syndrome. She joined us on RARECast this September to talk about what other rare disease organizations can learn from her experience. 🎙️go.globalgenes.org/4gU3uQ7 #RARECast #GlobalGenes
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During Part 2 of the Financial Assistance Webinar Series next week, meet with speakers to learn where to go and how to access the financial assistance resources and services discussed in part 1. Sign up for this webinar below! 👉 globalgenes-org.zoom.us/meet… #CareAboutRare
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In recognition of World Animal Day, let's take a moment to recognize the rare disease mascot - the zebra! Why the zebra? 🦓 #WorldAnimalDay #RareDisease #RareDiseaseAwareness #RareDiseaseCommunity #ShowYourStripes #RareDiseaseStripes #ZebraStripes #GlobalGenes
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The recording of part 1 of our Financial Assistance webinar series is now available to view! Join speakers from Accessia Health, Patient Advocate Foundation & PAN Foundation for a discussion around financial assistance for patients and their families. 💰 globalgenes.org/video/webina…
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We’d like to give a warm welcome to our September 2024 Global Advocacy Alliance members! Learn more about this global community of 750 rare disease advocacy organizations by visiting the Global Advocacy Alliance page: 🌐 globalgenes.org/abou.../glob…...
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Our next webinar is coming up in two weeks! Join Dr. Al Freedman as he provides tools and resources for supporting the mental health needs of rare disease patients, families and communities. Register now at the Zoom link below: 🌐 go.globalgenes.org/4erIwqc
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As seen at #WeekInRARE, our Event Planning Toolkit is LIVE! Global Genes partnered with Simons Searchlight to bring you the ultimate toolkit companion. Access this toolkit now! 📝 globalgenes.org/toolkit/even…
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Global Genes retweeted
Tanvee Varma, MD@TanveeVarma
30 Sep 2024
Leaving the @GlobalGenes #RAREHealthEquity Forum this weekend incredibly inspired and my heart full— honored to have been able to speak on a panel about clinical trial diversity 🗣️
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Day 3 of Week in RARE was all about Health Equity! 🦓🗣 Today aimed to empower attendees w/ tools & strategic insights to advocate for a more inclusive rare disease community. From crafting to table talks, we ended off Week In RARE with a fun & informative day! #RAREHealthEquity
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Global Genes retweeted
Comend@comendcare
27 Sep 2024
We're so happy to be at @GlobalGenes #weekinrare!🦓 Ready to listen, learn, and connect with caregivers, patient advocates, and YOU! ✨Find us for a free sticker, and let’s connect!
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Global Genes retweeted
Kansas City University@KansasCityU
27 Sep 2024
We’re thrilled to share a moment from the #RAREAdvocacySummit, hosted by @GlobalGenes, where Dr. Robert White presented on our commitment to #RareDisease research and providing compassionate care for all. Together, we’re paving the way for better understanding and treatment . 🦓
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