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?

Download newsletter as originally published here.

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

Download newsletter as originally published here.

Highlights of this month’s newsletter include:

• 2022 Year-End Recap
• 4th International Conference on DADA2 planned for 2023

Download newsletter as originally published here.

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?

Download newsletter as originally published here.

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?

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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?

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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

Download newsletter as originally published here.

Highlights of this month’s newsletter include:

• Gene Therapy Research, Alessandra Mortellaro, Ph.D.
• Hematopoietic Stem Cell Transplant, Hasan K. Hashem, M.D.

Download newsletter as originally published here.

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

Download newsletter as originally published here.

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

Download newsletter as originally published here.