World Rare Disease Day is a time when the global community comes together in unity, to build voice, awareness and support for the hundreds of millions of patients and their families affected by rare disease.
There are currently just over 7,000 rare diseases identified, affecting 30 million people in the US alone. Although these numbers are staggering, what is of even greater concern is that approximately 75% of those affected are children, making this disease category one of the most deadly and debilitating for our country’s children.
This community needs our help, and based on the sheer numbers, it is clear that these children and their families deserve much more attention, resources and support.
There are numerous organizations that are working to help some of the individual diseases. They are funding much needed research, helping drive policy and developing educational programs, all in an effort to bring hope to this underserved community. We encourage those who are concerned and compelled to join our cause to help both individual rare disease organizations, children and their families affected, as well as the community as a whole.
The Global Genes Project™ is a campaign that works to help individuals and organizations participate in this annual Day Of Unity. Global Genes Project™ has put together resources and ideas about how to participate and get involved, garner support or show your support!