Global Genes
Empowering the Next Generation Rare Disease Advocate. Global Genes and RARE-X officially merged into one organization December 2022 under the name Global Genes. Both organizations have been working toward the goal of empowering the next generation advocate both through their individual initiatives and their strategic partnership announced in 2021. RARE-X was born out of Global Genes after discussions with advocacy leaders, board members, partners, patients, and care partners, addressing a significant gap in access to tools, technology, and infrastructure. Hope. It’s in our genes.™www.globalgenes.org
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Search complete. 5 mentions across 5 episodes found for "Global Genes".
Oct 22, 2026
Daniel LevineHOST
For more information about rare disease and to connect to the rare disease community, go to globalgenes.org. To keep up on the latest news and trends affecting the rare disease community, be sure to visit raredaily.org. You can subscribe to the Rarecast RSS feed through raredaily.org or through SoundCloud, iTunes, Stitcher, or your preferred podcast manager.
Daniel LevineHOST
The Rarecast is produced for Global Genes by the Levine Media Group.
Daniel LevineHOST
You can also find our podcast, The Bio Report, on these popular podcast sites.
Daniel LevineHOST
Our theme music is composed by Jonah Levine and performed by the Jonah Levine Collective.
Michael GragliaHOST
At the conference, we are going to be working on our health economics work.
Michael GragliaHOST
So as we speak today, like now, now, we just put out a press release, links in the show notes, about launching a partnership with Global Genes, Citizen Health, and Kilo Health to do a health economics research.
Michael GragliaHOST
And what this is going to be is us filling out more darn surveys, but to... understand the indirect burden of this disease on our families.
Michael GragliaHOST
What does that mean in English? All the lost work, all the therapy, all the divorces, all the headaches, all the money we spend just surviving the SYNGAP life.
Daniel LevineHOST
[upbeat music] For more information about rare disease and to connect to the rare disease community, go to globalgenes.org. To keep up on the latest news and trends affecting the rare disease community, be sure to visit raredaily.org. You can subscribe to the Rare Cast RSS feed through raredaily.org or through SoundCloud, iTunes, Stitcher, or your preferred podcast manager.
Daniel LevineHOST
The Rare Cast is produced for Global Genes by the Levine Media Group.
Daniel LevineHOST
You can also find our podcast, The Bio Report, on these popular podcast sites.
Daniel LevineHOST
Our theme music is composed by Jonah Levine and performed by The Jonah Levine Collective.
Daniel LevineHOST
For more information about rare disease and to connect to the rare disease community, go to globalgenes.org. To keep up on the latest news and trends affecting the rare disease community, be sure to visit raredaily.org. You can subscribe to the Rarecast RSS feed through raredaily.org or through SoundCloud, iTunes, Stitcher, or your preferred podcast manager.
Daniel LevineHOST
The Rarecast is produced for Global Genes by the Levine Media Group.
Daniel LevineHOST
You can also find our podcast, The BioReport, on these popular podcast sites.
Daniel LevineHOST
Our theme music is composed by Jonah Levine and performed by The Jonah Levine Collective.
Daniel LevineHOST
For more information about rare disease and to connect to the rare disease community, go to globalgenes.org. To keep up on the latest news and trends affecting the rare disease community, be sure to visit raredaily.org. You can subscribe to the Rare Cast RSS feed through raredaily.org or through SoundCloud, iTunes, Stitcher, or your preferred podcast manager.
Daniel LevineHOST
The Rare Cast is produced for Global Genes by the Levine Media Group.
Daniel LevineHOST
You can also find our podcast, The Bio Report, on these popular podcast sites.
Daniel LevineHOST
Our theme music is composed by Jonah Levine and performed by The Jonah Levine Collective.