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 ResourcesRARE Advocacy Exchange
Global Genes’ RARE Advocacy Exchange is a virtual event designed to empower, equip, and elevate individuals with the leadership skills to help make a change through a series of 8 sessions. We’re creating a space where seasoned leaders and those new to their rare journey can come together to exchange knowledge, develop practical skills, and find the confidence to lead effectively.
RARE Drug Development Symposium
The 2025 RARE Drug Development Symposium, took place September 3–4 in Boston. Designed for rare disease advocates, patients, and families, this immersive 1.5-day event offered hands-on learning, expert-led sessions, and collaborative workshops to help you confidently navigate the drug development process. Whether you’re just starting your research journey or building on existing efforts, this symposium will equip you with the tools, strategies, and connections to make meaningful progress.
Quick Guide Resource Series
We are excited to announce the launch of a new series of Quick Guides for the rare disease community. Over the course of the year, this initiative will address some of the most pressing challenges faced by those affected by rare disease, including insights and best practices from the community in a variety of formats like videos, podcasts, toolkits, checklists, patient stories, and more.
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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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.