Empowering the Next Generation Rare Disease Advocate

October 12, 2022

There are almost 11,000 distinct rare diseases (10,867 to be precise) – a number continuously growing as about 300 new conditions are discovered annually thanks to rapidly progressing research and advances in genomics. Still, 95% of all rare diseases do not have a single US FDA-approved drug treatment. With more than 400 million people affected by rare diseases globally – half of them children – it’s more urgent than ever to enable progress toward new treatments and cures. 

Global Genes and RARE-X have been working toward the goal of empowering the next generation advocate both through their individual initiatives and their strategic partnership announced in 2021. In fact, 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. 

Now, we’re poised to do much more together. Today’s announcement of the merger of Global Genes and RARE-X creates a new milestone enabling the combined organization to provide the next generation of rare disease advocates the tools and resources needed to accelerate advocacy efforts and also support opportunities to drive research and therapy development. The combined organization will provide patient advocates with a complete and integrated set of essential services to continue their work towards support and awareness, and accelerate them towards drug development through a collaborative approach of biopharma, researchers and funders, along with patient health data collection as a central core.


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