Newsletter
December 2022: End of Year
Highlights of this month’s newsletter include:
- 2022 Year-End Recap
- 4th International Conference on DADA2 planned for 2023
November 2022: DADA2 in Twins
Highlights of this month’s newsletter include:
- Identical Twins with DADA2: Anna Maria Beretta and Veronica Beretta
- Reminders for 2023 – Patient Registry, Conference, and New Website
- What Will You Do With Your DADA2 Story?
October 2022: Global Updates
Highlights of this month’s newsletter include:
- Global Team Continues to Work on Consensus Statement
- Saudi Arabian Cohort: Study by Pediatric Hematologist, Dr. Fahad Alabbas
- What happens when a lifelong dream collides with your own diagnosis of DADA2?
August 2022: CZI Cohort Gathering
Highlights of this month’s newsletter include:
- CZI Cohort Gathering
- Gene Therapy Progress
- DADA2 Family rallies local high school to raise funds with bake sale
April 2022: Staff Highlights
Highlights of this month’s newsletter include:
- Meet Julie Williams, Genetic Counselor who will develop the DADA2 Patient Registry
- Meet Dr. Pui Lee, DADA2 physician and researcher at Boston Children’s Hosptial
- Meet Dr. Amanda Ombrello, DADA2 physician and researcher at the National Institutes of Health, Washington, DC
- Where in the world is DADA2 being studied?
February 2022: Rare Disease Day
Highlights of this month’s newsletter include:
- DADA2 Foundation Founder Dr. Chip Chambers will be the keynote speaker at the Nationwide Children’s Hospital virtual event
- Join us to raise awareness on Rare Disease Day 2022
December 2021: Natural History Study and Patient Registry
Highlights of this month’s newsletter include:
- DADA2 Foundation’s Natural History Study (NHS) and Patient Registry (PR)
- Dr. Dan Kastner and Dr. Pui Lee provide insight on the importance of natural history studies
- What Patients Need to Know… about The Natural History Study & Patient Registry
November 2021: First-Ever DADA2 Foundation Momentum Report
Highlights of this month’s newsletter include:
- Momentum Report Highlights
- A Note From Our Founder, Chip Chambers, M.D.
- Supporting Each Other: Private Facebook Families & Friends Page
October 2021: Research Round Up
Highlights of this month’s newsletter include:
- Gene Therapy Research, Alessandra Mortellaro, Ph.D.
- Hematopoietic Stem Cell Transplant, Hasan K. Hashem, M.D.
June 2021: Consensus Kickoff
Highlights of this month’s newsletter include:
- Consensus Committee gathers to discuss the critical milestone of writing a consensus statement
- Family Spotlight: Anna Maria Beretta