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 ResourcesJoin us at Week in RARE!
Global Genes is on the move — Week in RARE is moving to Kansas City, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation.
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.
Stay Connected
Sign up for updates straight to your inbox.
We recommend…
Learn and Find the Resources You needSearch our rare disease dictionary for information and resources on specific rare diseases.
We recommend…
Read the BlogLearn more about how Rare X is ‘Putting Real World Rare Disease Data in Researcher’s Hands.’
We recommend…
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.