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 Resources
Join us at Week in RARE!
We are delighted to combine the RARE Health Equity Forum and RARE Advocacy Summit as the Week of RARE, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This will be a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation.
September 18-21, 2023
Impact at a glance
Quick facts on the effects of rare diseaseLearn More Facts About Rare Diseases
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
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We recommend…RARE Concierge – Patient Services
Send a support request and a member of our Patient Services Guides will help you navigate the complicated and complex world of rare diseases. This service is free for patients, caregivers, and healthcare providers. We hope you’ll contact us so we can help.
We recommend…Learn and Find the Resources You need
Search our rare disease dictionary for information and resources on specific rare diseases.
We recommend…Join Our Community
Request an account to join our community portal.
We recommend…Read the Blog
Learn more about how Rare X is ‘Putting Real World Rare Disease Data in Researcher’s Hands.’
We recommend…Contacting us to reach and engage
Researchers and Research institutions interested in reaching out to patients for research purposes should contact us now to get started.
We recommend…the Global Advocacy Alliance page
Learn more about joining our Global Advocacy Alliance, its current members and their impact.
We recommend…Browse the resource hub
Browse information and resources.