LOS ANGELES, CA; April 15, 2019 --
Thank you to all our supporters on Rare Disease Day 2019, we are so thankful to have a community that is working with us to push science and medicine forward to meet the needs of rare disease patients.
This year we were lucky to have a new community raise awareness with us on Rare Disease Day. We want to thank all Illumina employees who decided to advocate for rare disease patients on this important day. When we say that every bit makes a difference, that is because it makes all the difference, especially for families with significant unmet need.
“When more communities join together, whether they may be from non-profits, parent groups, or industry leaders like Illumina, we can make a HUGE impact.” Said Romina Ortiz, COO Rare Genomics
An estimated 350 million people worldwide suffer from rare diseases, however each individual disease affects a relatively small number of people leaving little funding dedicated for its research. Of the 7,500 rare diseases with diagnoses, 95% have no FDA approved drug treatment and only 50% have a disease specific foundation providing support or research. This leaves most patients with neither hope of a cure nor an understanding of their disease. Since 2011, we have walked patients through their diagnostic journey to attain genetic sequencing, analysis and further research to find a clinically actionable result. We hope that every year we can grow the movement to help rare disease families, but we cannot do it alone.
As a reminder for what we do what we do, we would like to share with you a quote from a family that we just helped.
“ We were going to have to watch another child deteriorate & suffer with no diagnosis. We felt helpless. Enter the amazing, life changing, hope giving Rare Genomics Institute. We are beyond grateful for the compassion of RG. Thankful for giving us a diagnosis, for giving us knowledge, for giving us hope.”
Rare Genomics Institute is a section 501(c)3 nonprofit (EIN: 45-3624709) and the donation may qualify as a charitable deduction for purposes of federal income tax. Please keep this written acknowledgment of your donation for your tax records.