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.
Foundation increasingly presents to Grand Rounds and Conferences, raising awareness of DADA2 in Asia, Europe, and North & South America.
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.
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)
Due to the Covid-19 pandemic, we held our 3rd International Conference in a virtual format. More than 500 physicians and researchers from around the globe registered, and on any given day throughout the 3-day conference, more than 300 attended the conference from 30+ countries. Watch the Conference Videos here: https://www.youtube.com/@dada2foundation/playlists
Due to the ongoing Covid-19 pandemic, we held a virtual conference for patients, which brought more than 100 patients and their family members together for a day-long summit on the latest with DADA2. You can watch the Conference Videos on our YouTube Channel: https://www.youtube.com/@dada2foundation/playlists .
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.
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.
The 4th International Conference on DADA2 convenes again in person in Bethesda, Maryland, USA with 92 physicians and researchers from 23 countries attending. Talks focus on the pathophysiology of DADA2 as well as updates on new cohorts from around the globe. Watch all the conference videos on Youtube: https://www.youtube.com/channel/UC0mXynnGZAivm3SOlebEr8A