You’re not alone.
When you’re here, you’re part of a globally connected community committed to eliminating the challenges of rare disease. Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.
Find Your ResourcesEmpowering the Next Generation Rare Disease Advocate
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.
Distinct types of Rare and Genetic Diseases
Million People Suffer From a Rare Disease Globally
Patients Diagnosed with a Rare Disease is a Child
Children with a Rare Disease Won’t Live to See Their 5th Birthday
Search the RARE List
For more resources, disease-specific information, and news, search our RARE List- an extensive list of rare diseases and rare conditions.
Search Our Full RARE List
Rare Concierge
Try our free one-on-one service for patients looking for information and resources on their rare disease.
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Learn and Find the Resources You needSearch our rare disease dictionary for information and resources on specific rare diseases.
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Read the BlogLearn more about how Rare X is ‘Putting Real World Rare Disease Data in Researcher’s Hands.’
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Contacting us to reach and engageResearchers and Research institutions interested in reaching out to patients for research purposes should contact us now to get started.