Global Genes

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

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…

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

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

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…