The DADA2 Foundation Timeline
Get to know us and how the Foundation began - just months after the disease was discovered. Without collaboration among the world's leading researchers and physicians, as well as determined patients, we might not be on our way to a cure.
DADA2 Increasingly Reaches Global Physicians
Foundation increasingly presents to Grand Rounds and Conferences, raising awareness of DADA2 in Asia, Europe, and North & South America.
DADA2 Joins Chan Zuckerberg Initiative Inaugural Rare as One Cohort
Chan Zuckerburg Initiative chooses DADA2 Foundation for the inaugural cohort of the Rare As One Project – which invests grant funds in capacity building for patient-driven rare disease foundations.
DADA2 Foundation Presents at NIH Rare Disease Day
The DADA2 Foundation partners with leading researchers to present DADA2 at the NIH’s Rare Disease Day events. To watch, copy and paste this link and begin watching at 2:09:00. https://videocast.nih.gov/watch=34608 Credits to the National Institutes of Health, Washington, D.C., USA (2018)
Prevalence Study Published
The DADA2 Foundation, Boston Children’s Hospital and MIT/Broad Institute study suggests that the carrier frequency of deleterious ADA2 variants is approximately 1 in 236 individuals, which translates into an estimated disease prevalence of 1 case per 222 000 individuals. This could suggest potentially 35,000 patients globally if fully diagnosed.
Consensus Statement Published
Published the world’s only and first Consensus Statement alongside 35 researchers & physicians and 3 patients in the Journal of the American Medical Association Network Open Access.