Posts by Bridget Kling
February 2023: Rare Disease Day
Highlights of this month’s newsletter include:
- What Can You Do to Celebrate Rare Disease Day?
- Patient Registry Sneak Peek
- Feature on DADA2 Patient, Andy Grundstad
- Global Reach: Who’s Engaged in DADA2?
January 2023: New Year of Discoveries & Collaboration
Highlights of this month’s newsletter include:
- The DADA2 Foundation is Grateful for Your Support
- Mutations and What Do They Mean?
- Patient Update: Adela Wee
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?
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