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.
RARE-X was built to give patient communities the power to securely collect, structure, and share their data to drive research and drug development across rare diseases. Since its founding in 2019, they have made much progress toward de-burdening data collection for patient advocates, adhering to the highest standards of data governance, data modeling, with scientific rigor, and making rare disease patient data available to researchers worldwide.
In parallel, Global Genes has added to its programs and services to meet the needs of advocates – from the newly diagnosed to those next gen advocates seeking new science for treatments. We created new initiatives, integrated existing ones, upgraded service offerings and technology, added critical talent, and focused on addressing patient needs and growing our impact on diagnosis, research, drug development, and inclusive and equitable advocacy and access to care, trials, treatments, and services.
Together, Global Genes and RARE-X will provide patient advocates with a continuum of services to serve and accelerate their path. From initial support to capacity building for organizations, from financial resources to understanding the drug development ecosystem and how to work within it, from rare “life” support and awareness to resources to empower progress and spawn more treatments and cures for rare diseases, and enable communities to collect and share data with researchers.
The gap is widening between the number of known rare diseases and the number of treatments available. Global Genes, with RARE-X, will create an environment where more therapeutic assets can advance rapidly and be made available to patients – an environment where rare disease advocates are equipped to drive progress in their disease area and across rare disease, and where patients and organizations have the knowledge, resources, and ability to leverage this data.
Hope. It’s in our genes has been the Global Genes tagline since its beginnings in 2009. Today we’re more hopeful, motivated, and energized than ever as we work to eliminate the burdens of rare diseases as one.