Patients & Families

With You In Your Journey

Whether you have just been diagnosed or have navigated living with DADA2 for years, you are on a journey – and we want to be a resource alongside you.

We are here with next steps to navigate your care with your doctor, your feelings of relief or fear, and your everyday life. As the DADA2 Community, we don’t want you to feel alone.

This fall, we will publish a Newly Diagnosed Patient Toolkit, and we can't wait to share it with you.

In the meantime, if you are a newly diagnosed patient, please feel free to email us and we will help you get your journey started. No matter where you are in your journey, be sure to join the DADA2 Facebook Families & Friends closed group, where the community can help answer questions.

Of course, none of our advice or that which you find on our Facebook group replaces what your doctors tell you.  Please bring all ideas to them for their medical advice. 


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Living with DADA2 row

Living with DADA2

Whether you are newly diagnosed or have been living with DADA2 for a while, you are not alone. The DADA2 Community grows stronger every day. Because DADA2 is a rare disease, it is crucial for patients to connect with resources and support once they receive a diagnosis. The DADA2 Foundation is here to help. Click the button below to find information for patients and families living with DADA2.

According to 2021 research, nearly 35,000 people in the world might be living undiagnosed with DADA2

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Join our monthly newsletter which highlights work being done around the globe to cure DADA2 and guide patients living with the disease. Visit the newsletter archive to learn more.