Global Genes (@GlobalGenes) / X

Global Genes

26.9K posts

Global Genes

@GlobalGenes

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

We're global!

Joined November 2009

Global Genes
@GlobalGenes
Oct 18, 2024
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
Global Genes
@GlobalGenes
Oct 17, 2024
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-nbi…
Global Genes
@GlobalGenes
Oct 17, 2024
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/castleman… #GAASuccessStories
Global Genes
@GlobalGenes
Oct 16, 2024
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
Global Genes
@GlobalGenes
Oct 15, 2024
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/putt…

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