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 ResourcesLeadership Lab 2026
CALLING ALL PATIENT ADVOCACY LEADERS! Global Genes is proud to partner with the Termeer Institute to launch Leadership Lab, a day-long immersive experience for rare disease patient advocacy leaders. Through interactive workshops, expert-led sessions, and real-world scenarios, participants build the strategic relationship-building, negotiation, and communication skills needed to create lasting partnerships with researchers, industry partners, funders, and clinicians — and drive meaningful progress for their communities.
Join us in Boston on November 4th or San Diego on December 2nd!
Rare Disease Curriculum
The Rare Disease Curriculum is a seven-module, asynchronous online learning program developed to equip healthcare professionals, caseworkers, patients, caregivers, and advocates with foundational and applied knowledge across the rare disease landscape. The curriculum’s goal is to close the persistent gap in rare disease education within the healthcare system- helping providers recognize warning signs earlier, correct common misconceptions, and connect patients to appropriate resources sooner, ultimately reducing diagnostic delays and improving outcomes for the millions of people affected by rare disease.
Distinct types of Rare and Genetic Diseases
Million People Suffer From a Rare Disease Globally
Patients Diagnosed with a Rare Disease is a Child
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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Hope. It’s in our genes.™
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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.