Together to Cure DADA2: Rare Disease Day 2024

Greater Awareness, Faster Diagnosis

When more physicians know about DADA2, patients can get a diagnosis faster, be treated more comprehensively and live life to the fullest.

Studies suggest that more than 30,000 DADA2 patients are out there, undiagnosed but living with symptoms.

Join us this RARE DISEASE DAY to raise awareness among physicians and find the patients. With your support, we'll work all year to make sure every doctor and patient can end the diagnostic odyssey that so many patients endure. 


4 Ways to Raise Awareness this Rare Disease Day

STEP 1: Get Your DADA2 Swag

Wearing or carrying our BRAND NEW logo gear can be a great conversation starter - with friends, at a conference, or even someone you've never met!

Our store has shirts, coffee cups, blankets, and more! And approximately 30% of the cost is donated to the Foundation. Order today to receive in time for Rare Disease Day! We'll ship all over the globe!

Go to the Store

STEP 2: Tell Your Story on Social Media

We each have a story. Tell yours on social media or with a text to a friend. Here's all you need to do:

  • Make a 1-2 minute phone video or write your story. Post it to your favorite platform or send it to those who care about you. Begin with your name and diagnosis story, updates on life today and hopes for the future!
  • Post your story to social media.  Use hashtags #dada2 #dada2foundation #raredisease #rarediseaseday
  • Share posts from our social media accounts. We'll be posting stories all month long!

Download graphics to help tell your story!

STEP 3: Raise Funds

The Foundation has plans all year to reach physicians who need to know about DADA2, and we need your support and the support of those around you! Sometimes, asking your friends to donate is a way to let them help you in your journey when they really can't do much more. Commit to raising $250 or more and reach your goal by March 7, and we'll send you a t-shirt from the new store! You can register to make your own fundraising website! 

Get started with fundraising

Or, make a donation yourself and request a matching donation from your company

STEP 4: Join a Regional or Community Initiative

Rare Disease Day is celebrated globally. Join any one of these regional efforts or talk to your city about what they can do to raise awareness for DADA2.

  • Live around New York City and want to be on TV? Join Rare Disease advocates on the Plaza at NBC's TODAY Show on February 29th. More info and sign up is here! Also, email us at to let us know you're going. 
  • Want to ask your city to light up a bridge or building for DADA2? Research landmarks in your community that have the ability to change their lighting, and follow these directions to make the request! 
  • Live near Washington DC and want to be an advocate in the U.S. Government? Join the EveryLife Foundation in their advocacy efforts this month. Or research advocate organizations in your own country.
  • Do you know of a local radio or TV station that might want to interview you? We can help you prep for a quick spot on your local news. Email us your request and let us help you tell your story!