Ggp frdtag rgb original

About Global Genes Project


The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world.

Sign Up for the RARE Open Registry Project™ Today!

Global Genes Project and PatientsLikeMe® have joined forces to create the RARE Open Registry Project™ (RARE ORP™) to provide a resource for patients and families fighting rare and genetic diseases.

Every time a person or family enters data into the RARE ORP™ system, they receive information back showing their data compared to other patients fighting similar diseases or taking similar therapies. 

The more you share, the easier it will be to find rare patients like you or your loved ones.

Register today -- it's fast and easy!

 

 

Profile Activity

10791 Views

337 Followers

Member since:
Jun 20, 2012

Last updated:
Jun 24, 2017

Want to connect to patients like you and get the latest news from Global Genes Project? Join now!
  1. Global Genes Project
    Jason Omenn
    Director of Development

    JasonOmenn posted an announcement on behalf of Global Genes Project

    Our new solidarity Hope bracelets for people fighting rare and genetic diseases.

    • Genes genetic diseases rare hope bracelets medium
    1 comment from other members. Only showing public users' comments. Sign up to see all comments!
    • Global Genes Project
      Jason Omenn
      Director of Development

      JasonOmenn posted an announcement on behalf of Global Genes Project

      Support the Genes Ribbon for Rare and Genetic Disease Awareness.

      • Rare disease day genes ribbon medium
    • Global Genes Project
      Jason Omenn
      Director of Development

      JasonOmenn posted an announcement on behalf of Global Genes Project

      Abigail Grace is a precious four year old girl whose story touches the hearts of people near and far. After being sick during June 2011, she had an MRI and was diagnosed with Metastic Pineoblastoma. This is a rare malignant brain cancer which has already spread into her spine.

      Despite this extremely difficult cancer diagnosis and painful treatments, sweet little Abby and her family continue to embrace hope.

      Thanks to Sweet Nectar Society for providing Abby's inspiring and touching picture for our 2012 Tribute to Champions of Hope Gala.

      • Childhood brain cancer treatments medium
    • Global Genes Project
      Jason Omenn
      Director of Development

      JasonOmenn posted an announcement on behalf of Global Genes Project

      Brothers James and John Valvano are in a fight for their lives against Huntington's disease, a progressive neurodegenerative disease passed down through families in which nerve cells in the brain simply waste away. We featured James and John's at our 2012 Tribute to Champions of Hope Gala for all the work they do for HD and WeHaveAFace.org.

      • Huntingtons disease family awareness medium
    • Global Genes Project
      Jason Omenn
      Director of Development

      JasonOmenn posted an announcement on behalf of Global Genes Project

      Cali and Ryann have an undiagnosed rare neurological disease. The National Institutes of Health has pledged $145 million in funding over the next seven years for the Undiagnosed Diseases Program (UDP) to provide a new network of medical research centers focused on the discovery, diagnosis, and care of undiagnosed patients.

      http://globalgenes.org/national-institutes-of-health-marks-145-million-to-help-patients-with-undiagnosed-rare-diseases/

      • Undiagnosed rare disease cali ryann medium
    • Global Genes Project
      Jason Omenn
      Director of Development

      JasonOmenn posted an announcement on behalf of Global Genes Project

      Sadly, this is a true statistic that we all must try and change. Millions of children pass away each year from rare and genetic diseases and no one seems to hear about it. Collectively, we have to do something and take action. 95% of all rare diseases do not have a single FDA approved drug treatment or cure - how scary is this fact!? Lack of treatments impacts all of us.

      • Genetic diseases genes rare medium
    • Global Genes Project
      Jason Omenn
      Director of Development

      JasonOmenn posted an announcement on behalf of Global Genes Project

      Learn how to become a supporter of Global Genes Project. http://globalgenes.org/supporting-organizations/

      • Rare disease supporting organizations badge medium
    • Global Genes Project
      Jason Omenn
      Director of Development

      JasonOmenn posted an announcement on behalf of Global Genes Project

      Learn about the 7000 Bracelets for Hope rare and genetic disease awareness campaign.
      http://globalgenes.org/7000-bracelets-for-hope/

      • 7000 i support 7000 bracelets for hope medium
    • Global Genes Project
      Jason Omenn
      Director of Development

      JasonOmenn posted an announcement on behalf of Global Genes Project

      New hope logo for Global Genes Project.

      • Genes genetics dna rare diseases medium
      1 comment from other members. Only showing public users' comments. Sign up to see all comments!
      • Global Genes Project
        Jason Omenn
        Director of Development

        JasonOmenn posted an announcement on behalf of Global Genes Project

        Rare Disease Day logo from Global Genes Project. Get involved here!
        http://globalgenes.org/world-rare-disease-day/

        • Rare disease day logo hope  medium
        1 comment from other members. Only showing public users' comments. Sign up to see all comments!
        • Show more