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
What is RARE Concierge Patient Services?
Our RARE Concierge patient service guides are here to help you navigate the complicated world of rare and undiagnosed diseases. No matter where you are in the world, your journey, or what your unique need is, RARE Concierge can help you.
Our team has decades of personal and professional experience in rare disease advocacy and support. As patients, caregivers, and advocates, we understand the challenges you and your family face. RARE Concierge can provide resources, education, and important connection free of charge.
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
Try our free one-on-one service for patients looking for information and resources on their rare disease.
Sign up for updates straight to your inbox.
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.