News Archive
December 2022: End of Year
December 1, 2022
Highlights of this month’s newsletter include:
- 2022 Year-End Recap
- 4th International Conference on DADA2 planned for 2023
November 2022: DADA2 in Twins
November 16, 2022
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
October 1, 2022
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
August 21, 2022
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
April 18, 2022
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
February 17, 2022
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
December 14, 2021
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
November 18, 2021
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
October 4, 2021
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
June 3, 2021
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
April 2021: Driving Towards Consensus
April 7, 2021
Highlights of this month’s newsletter include:
- Patient & Family Gathering Planned
- Clinician Spotlight: Dr. Ombrello
- Family Spotlight: The Puzio Family
- Nashville, TN joins other US cities to light up monuments for Rare Disease Day
February 2021: Inaugural Newsletter
February 25, 2021
Highlights of this month’s newsletter include:
- Rare Disease Day 2021
- Researcher Spotlight: Dr. Pui Lee
- Patient Spotlight: Ishaan Jeloka
- Dr. Dan Kastner (who discovered DADA2) receives prestigious Crafoord Prize from the Royal Swedish Academy of Sciences
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