Global Genes
  • About
    • Team and Boards

      Get a glimpse of the people behind Global Genes

    • Careers

      Join the Global Genes team

    • Contact Us
    • Corporate Alliance

      a partnership committed to improving the lives of people with rare diseases

    • Sponsorship Opportunities

      Learn how organizations can support Global Genes financially

    • Press

      Global Genes’ latest press releases

    • Publications
  • Community
    • Global Advocacy Alliance

      a members only, global community of non-profit organizations and support group

    • Global Genes RARE Disease Community
  • Resources
    • RARE Concierge – Patient Services

      Free, personalized service for patients, caregivers, and healthcare providers

    • Clinical Trials Hub
    • Resource Hub

      Search RARE Daily, podcasts, videos, blogs, stories, toolkits, and reports

    • Quick Guide Series
    • RARE Daily

      Browse the latest news, articles, and blog posts from Global Genes.

    • RARE Disease Facts

      These RARE facts show the impact of rare disease

    • RARE List of Diseases and Clinical Trials

      Search for a particular rare disease, helpful resources, and clinical trials.

    • Emerging Diseases

      Diseases that are in the process of being officially classified.

    • Know Your Family History

      Learning family health history can help find out if a disease runs in a family

    • RARE Disease Storytelling
    • Data DIY

      Your involvement in driving understanding, discovery, and treatments for rare disease

  • Research
    • Research Resources

      Resources to advance your research

    • Clinical Trials Hub
    • Research Acceleration Program

      Advisory program that assesses therapeutic landscape for a disease and develops roadmap recommendations

    • About RARE-X

      Platform for collecting, structuring and sharing rare disease data in collaboration with PAGs

    • RARE-X Disease Communities
    • RARE-X Data Overview
    • RARE-X: How to Submit a Data Request
    • RARE-X in Sponsored Research

      Leveraging RARE-X in sponsored research projects and consortia

    • Pompe Consortium

      Removing barriers for data collection and sharing for individuals living with Pompe disease

    • Sleep Consortium

      Creating clinical trial ready populations in central disorders of hypersomnolence (CDoH) and identifying meaningful outcome measures

    • Vision Consortium

      Creating clinical trial ready populations in the ocular disease community and identifying meaningful outcome measures

    • Xcelerate Rare - Open Science Data Challenge

      A collaborative and competitive environment to use patient-provided data to solve unknowns

  • Events

    Browse upcoming Global Genes hosted events and register

    • RAD Brain Workshop

      RARE Advocate Development (RAD) 3 day educational event on development of CNS therapies

    • RARE Advocacy Exchange

      A year long virtual patient summit

    • RARE Drug Development Symposium
    • World Rare Disease Day

      An annual observance to raise awareness for 400 million people affected by rare disease globally

    • Community Events

      Explore events hosted by communities, individuals, and other organizations outside of Global Genes

Donate
Global Genes
  • Support
    • RARE Concierge – Patient Services
    • Commitment to Mental Health & Well-Being
    • Join our community
    • Share Your Story
  • Education
    • Learn
    • Resource Hub
    • RARE List
    • RARE Disease Facts
  • Research
    • About RARE-X
    • RARE-X Disease Communities
    • RARE-X for Researchers
    • RARE-X Research Data Access
    • Open Science Data Challenge
  • Events
    • RARE Advocacy Exchange
    • RARE Drug Development Symposium
    • World Rare Disease Day
    • Community Events
  • About Global Genes
    • Team and Boards
    • Health Equity
    • Global Advocacy Alliance
    • Corporate & Research Alliance
    • Sponsorship Opportunities
    • Career Opportunities
    • Press
    • Contact Us
  • Cookie Policy
  • Privacy Policy
  • Global Genes Terms Of Use
Donate to Global Genes

1012 14th Street NW, Suite 500
Washington, DC 20005
Phone: (+1) 949-248-RARE (7273)

Global Genes 501c3 – EIN: 26-3331487

Manage Consent
To provide the best experiences, we use technologies like cookies to store and/or access device information. Consenting to these technologies will allow us to process data such as browsing behavior or unique IDs on this site. Not consenting or withdrawing consent, may adversely affect certain features and functions.
Functional Always active
The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.
Preferences
The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.
Statistics
The technical storage or access that is used exclusively for statistical purposes. The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.
Marketing
The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.
  • Manage options
  • Manage services
  • Manage {vendor_count} vendors
  • Read more about these purposes
View preferences
  • {title}
  • {title}
  • {title}