I’ll keep my intro this month short and sweet: Collaboration is Key. Below are a number of updates that illustrate this long known truth that we know changes lives.

In particular, I want to emphasize the incredibly important role that physicians play in collaboration today and especially in the future. It is YOUR interactions with patients that will help fuel the next wave of discovery for DADA2.

Dear DADA2 Community:

It is Rare Disease Day next week. This is THE time to honor each of our journeys – hard fought and challenging, but unique and inspiring!

Dear DADA2 Community, Welcome to this new year! As I mentioned at the end of last year, 2024 will be momentous. We have so much in the works that we are excited to share in due time. For now, I want to say thank you to every one of you who donated to the DADA2…

Dear DADA2 Community,

This may well be the most intellectually stimulating, time consuming, and absolutely fascinating newsletter we may ever send – that is, until the physicians and researchers meet again in 2025 for the 5th International Conference on DADA2.

Dear DADA2 Community,

What happens when you get nearly 100 scientists and clinicians in a room for 36 hours to share their latest findings and questions on DADA2?

Well, you get 30+ talks updating on the science and clinical news. You get 10+ posters that generate hours of discussion among scientists and doctors alike. You get side conversations and pages of notes and agreements to follow up, join efforts, and continue to pursue treatments and a cure.

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?

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

Highlights of this month’s newsletter include:

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

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?

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?

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

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?

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

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

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

Highlights of this month’s newsletter include:

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

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

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

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