December 2023: Advancing Our Understanding!
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.
As of today, you can now access every presentation from the 2023 Conference on our YouTube Channel. This is our commitment, since the formation of the DADA2 Foundation in 2016, to share information with you.
Hopefully, this information will help our physicians and researchers to continue the amazing collaborations that have developed over the last seven years.
Patients and families all have become researchers and doctors in your own right. You speak and understand medical terminology, therefore you know the issues and topics, and you know how you or your family members feel when things are good and when things are not so good.
But to all of us, the DADA2 Conferences bring together the best and the brightest thinking in DADA2 today. And I am so thrilled to share it with you. If one of these videos helps one of you get closer to a treatment, then we are accomplishing our mission to find innovative ways for patients & families, physicians, researchers, non-profits, government, academia, biotech and pharma, to work together to accelerate research, to raise awareness about the condition, and to improve the lives of DADA2 patients around the world.
During this time of year, we reflect on what’s happened and what’s to come. I hope you find time to watch a few videos.
Wherever you are in this last month of the year, we all send our best wishes for a wonderful season. Thank you for all you do to support the DADA2 Foundation.
Kindest regards,
Chip Chambers, M.D.
Founder and President, DADA2 Foundation
WATCH: What Drives a DADA2 Scientist’s Discovery?
CLICK EACH SECTION TO WATCH THE VARIOUS SESSIONS
Update Around the World: India
India happens to be a location where many DADA2 diagnoses have been made in a single country. To date, more than 70 patients are currently under care.
We do not know why this is the case, but we do know that incredible doctors, researchers and even patients are at work to care and advocate for DADA2 patients!
Aman Sharma, M.D., professor at PGIMER Chandigarh, is one of them and was recently named President Elect of the Indian Rheumatology Association, which allows him to guide the direction of rheumatological discoveries and care in India.We caught up with Dr. Sharma at the most recent conference:
“There has to be a dialogue across the specialties. There has to be a dialogue with the neurologists regarding patients presenting with recurrent strokes plus other features. There has to be dialogue with the hematologists regarding patients with bone marrow failure syndromes. Once there are dialogues, there have to be capacity building for diagnosis. Then, it’s very important to have a patient on board, because at the end of the day, it is the quality of life of the patient which is more important. That’s what we are working towards, isn’t it?“
As doctors continue treatments and researchers study the disease, patients in India are also taking initiative to advocate for DADA2 patients. Pooja Gupta, who was diagnosed with DADA2 in 2022 thanks to a doctor realizing her misdiagnosis from 1980, recently worked with the Indian government to designate DADA2 as an official Rare Disease on the country’s policy register. This means that patients who pay for TNF inhibitors may be eligible for a tax exemption, and/or will be able to procure them from Government authorized hospitals/distributors at low or no cost. The impact will take place in the coming months, bringing significant relief to the high costs.
Added Dr. Sharma, “When the numbers {of DADA2 Patients} increase, this is going to be the next challenge that we will have to plan to tackle.”
We’re thrilled to work alongside doctors like Dr. Sharma and cheer on patient advocates like Pooja.
Donate to the DADA2 Foundation
It’s the season of giving! Please consider a gift to the DADA2 Foundation so we can continue our mission to collaborate.