News Archive

dada2 newsletter april

APRIL 2024: Collaboration is Key

April 23, 2024

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.

2024 February DADA2 Newsletter_page-0001

February 2024: Take Action to Honor our Journeys on Rare Disease Day

February 20, 2024

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!

JANUARY Cheers to New Beginnings

January 2024: Cheers to New Beginnings!

January 26, 2024

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 Foundation as part of our end of year efforts. We simply could not keep our…

DECEMBER 2023 - Advancing Our Understanding

December 2023: Advancing Our Understanding!

December 8, 2023

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.

November DADA2 Conference Recap

November 2023: DADA2 Conference Recap

November 10, 2023

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.

DADA2 February 2023 Newsletter

February 2023: Rare Disease Day

February 1, 2023

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?
DADA2 January 2023 Newsletter

January 2023: New Year of Discoveries & Collaboration

January 1, 2023

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
DADA2 December 2022 Newsletter

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
DADA2 November 2022 Newsletter

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?
DADA2 October 2022 Newsletter

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?
DADA2 August 2022 Newsletter

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
DADA2 April 2022 Newsletter

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?