APRIL 2024: Collaboration is Key
Dear DADA2 Community:
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.
So, with that in mind, I invite you to read, but I also invite you to take one step of action: join us on LinkedIn. Why? It’s a wonderfully vibrant platform where science and clinical topics can be discussed in our digital world, and a place we can activate in the future. So, if you are a physician or know one, please follow us (link below). It’s my hope to gain 100 followers before our next newsletter.
This coming month, Dr. Pui Lee will travel to Tunisia to give two presentations on DADA2 to the Pediatric Rheumatology in Africa Conference. This is a part of the world where we anticipate there will be patients but where we do not yet have many points of contact. We wish Dr. Lee safe travels and look forward to his report next month!
Without further ado, thank you for your dedication to DADA2. Read on for some amazing updates!
Cheers,
Chip Chambers, M.D.
Founder & President, DADA2 Foundation
ONE ACTION: Join us on LinkedIn
We are building our network on LinkedIn – especially for physicians. Please take one action today:
- Follow us on LinkedIn – OR –
- Forward this newsletter to a clinician or researcher who needs to know about DADA2
This newsletter reaches many in our community, but spam and security blockers make it impossible to reach some. So we want to enact multiple ways to connect!
Quality of Life: A Focus of Research & Care
Several organizations are continuing the important work of assessing DADA2 patients’ quality of life both while in treatment and prior to treatment. Managing the symptoms of DADA2 is only part of the puzzle. Making sure patients feel as well as possible is a critical piece of our work!
We are thrilled to have been partnering with several groups in the United Kingdom to help communicate the everyday, as well as acute and severe, impacts on life with DADA2.
- In partnership with many physicians in the UK who worked from a clinical perspective, the Foundation worked with Dr. Michal Blank of the National Health Service to inform their Clinical Priorities Advisory Group on the quality-of-life impact of DADA2. The end result is to hopefully approve Enbrel and Humira in the UK to treat DADA2.
- Meanwhile, Dr. Isabelle Meyts in Belgium is about to launch a survey about the quality of life for DADA2 patients that we will help disseminate. Watch for an email asking for your participation as a physician or a patient.
Physician Brochure Available
Are you a physician who would like to give your colleagues more information about DADA2? Or perhaps you are attending a meeting or conference this summer where you can share information. Download our new brochure, which gives a high-level view of DADA2 and directs physicians to our website for more resources.
Interdisciplinary care is a critical part of both identifying and diagnosing DADA2 and treating the disease. We recommend you share this brochure with any ER physician, primary care, pediatrician, rheumatologist, immunologist, dermatologist, hematologist/oncologist, or opthalmologist – since DADA2 can present in any of these areas! You can print on a simple printer, or send to your facility’s printing department.
Latest Published Articles on DADA2
DADA2 Syndrome Causing Cerebrovascular Ischemic Syndromes in Two Asian Siblings (P10-5.018)
Y Kong, HC Chua – Neurology, 2024 – AAN Enterprises
Recurrent Mononeuropathy, Stroke and Deafness in a Teenage Boy
SR Chowdhury, B Kansal, A Maheshwari… – Indian Journal of Pediatrics April 10, 2024 – Springer
TAKE ACTION WITH A DONATION
Every dollar you donate help us find more physicians who can diagnose DADA2, ending the diagnostic journey of a patient and starting their journey to health!