DADA2 Foundation

05/06/2026

Our latest newsletter is OUT! From the long-game of research and practical findings for care to patients visiting the NIH to fundraising, our community remains active on a GLOBAL LEVEL. Read April's stories! https://dada2.org/april-2026-action-on-a-global-level/

04/15/2026

This week, the NIH is hosting a symposium to honor the work of Dr. Dan Kastner, M.D., Ph.D., who has served as the Scientific Director of the National Human Genome Research Institute. Most importantly to this community, he is the researcher who discovered DADA2 in the United States, and has hosted each DADA2 Foundation Conference since the beginning. As part of the recognition, the host group is accepting tributes to Dr. Kastner’s work. We invite you to share your thoughts, comments, photos and/or any other memories of how Dr. Kastner has impacted your life. Please do so here by Sunday, April 19:

Contributors close Abdul Alrasheed contributed a message Adam Phillippy contributed a top 5 list Adriana A. De Jesus contributed a message Ahmet Gül contributed a picture Ahmet Gül contributed a picture Ariane Soldatos contributed a message Balu Athreya contributed a essay Cecilia Poli contributed...

04/08/2026

DADA2 awareness is top of mind today for a whole new audience of people who may never have known about the life of families living with a rare disease. Named the "charity of the game", The DADA2 Foundation will be featured at a lacrosse game between Vassar and their rival. It's all the idea of Tess Billings, whose family navigates multiple DADA2 diagnoses. Let's cheer on Tess and her team to victory and hope that more people learn how they can support!

03/18/2026

Raising awareness is so important to the work of treating and curing rare diseases - and it is so brave. Join us around the globe in watching a new documentary - Defying Rare Disease on CNBC with Becky Quick whose own child is navigating a diagnosis. In the piece, she highlights the stories of families who are chasing cures for their children. International viewing times and media platforms are listed here:

Hosted by Becky Quick, “CNBC Cures: Defying Rare Disease,” spotlights the families dealing with rare diseases and the scientists, advocates, and innovators fighting to change their futures.

03/05/2026

We are just about $500 away from reaching our Rare Disease Day fundraising goal. Will you help us top out the thermometer? https://secure.qgiv.com/event/dada2rdd2026/?blm_aid=21226

02/28/2026

Our latest newsletter celebrates the journeys of DADA2 patients, and the advocacy they have taken on to support fellow patients. We also share our gratitude for the increasing awareness of the disease as well as new access to diagnosis and further lines of inquiry by labs around the world.

We are honored to convene this community as we collaborate to find a cure. And, we need your support for our mission! We surpassed our fundraising goal thanks to the efforts of patients sharing their stories with friends and those friends investing in the work.

But there's still time to extend that reach so that we can gather even more patients, bring researchers together to discuss new avenues of discovery, and resource physicians with information they need to identify and treat this rare disease.

Read more and help us extend our goal!

February 28 is Rare Disease Day. It’s a day that we honor – globally – the bravery, persistence, and curiosity of everyone whose life is touched by a rare disease. DADA2 is fortunate to be one disease that is not a common diagnosis but is supported by a huge community of researchers around the...

02/27/2026

Thrilled to join fellow Nashville rare disease advocates last night at Rare Disease Day event to view a documentary through Too Rare to Care. It was a great time of connection and learning. Thanks to Potocsnak Center for Undiagnosed and Rare Diseases at Vanderbilt University Medical Center for hosting us with National Organization for Rare Disorders.

02/25/2026

Welcome to our friends from North Dakota who heard DADA2 Patient Andy Grundstad on 660 KEYZ News Radio this morning! We are eager for you to learn more and, if you feel you want to make an impact, make a gift in honor of Andy's and so many other patients' fight! We are a resource to each of them and to the physicians who treat them! https://secure.qgiv.com/event/dada2rdd2026/account/2247429/

02/23/2026

Nashville, Tennessee - home to the DADA2 Foundation - is raising awareness this week for