MyGene2 is a portal through which families with rare genetic conditions who are interested in sharing their health and genetic information can connect with other families, clinicians, and researchers. The genetic cause of most rare conditions is unknown and as a result, most families who undergo exome sequencing or whole genome sequencing do not receive a diagnosis. By sharing information through MyGene2, a family can help and even participate in the discovery of new genetic conditions and the genes underlying these conditions.
We are grateful to Dr. Jessica X Chong and Dr. Michael Bamshad for having provided emotional support for Dazzle4Rare in the past. Dazzle4Rare stands firmly behind the idea that by sharing what we know about our genetic profile, we can help families inch closer to discovering the mysteries of genes of unknown significance.
You can learn more about what they do and how to register on their website, MyGene2.org.
Mark2Cure was an invaluable member of our rare disease organisation network. Ginger Tsung and her team worked hard to help raise Dazzle4Rare awareness during the month of August from 2016 to 2019.
Mark2Cure is no longer seeking citizen scientists to help collate information on the NGLY-1 gene, however, they do continue to work behind the scenes to serve this rare genetic condition community. We are thankful for all they have done and continue to do.
You can find more information about the pause in their citizen science work on their website on their blog.
https://mark2cure.org/blog/thank-you-campaign-pause/
Want to Join #Dazzle4Rare?
We are always happy to speak with new organisations and form new relationships to help elevate undiagnosed and rare voices. If you’re like to get in touch with us to participate in Dazzle4Rare or support our efforts in some way, please visit the Contact page. We look forward to hearing from your organisation!
