My Nonprofit Reviews
Review for Global Genes®, Aliso Viejo, CA, USA
I went to the 2019 Summit (first time), and was shocked by the amount of resources available to me as a patient, and to my friends who are also struggling with their own rare disorders.
Unlike searching aimlessly on the web for hours about specific disorders, the Global Genes website offers guidance to help you navigate the ins-and-outs of things, catered towards caregivers, patients, and advocates - connecting dots I didn't even know were out there, nor had been mentioned by any of the many medical professionals I've seen over the past 3 years.
If you or a friend are living with (or are curious about) any rare disorder, PLEASE check out the Global Genes website, sign-up for an event near you, go to next year's summit, and get ready to feel and BE less alone.