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!
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Jun 20, 2012
Jun 24, 2017
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.
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.
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.
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.
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