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Rare Disease Day

The last day of February is World Rare Disease Day, an annual event that gives us the chance to come together, show our stripes, and raise awareness for more than 300 million people affected by rare disease globally.

We use this day to help raise awareness for the CHARGE community, and all of those individuals affected by rare diseases – including the unique challenges we face every day.


The zebra is the official symbol of rare diseases in the United States. Every stripe has a story…

  1. Share your story with us! Fill out this form and send a photo to have your story featured on our Facebook page.
  2. Show your stripes on social media by using #ShowYourStripesForCHARGE
  3. Share the link to the Rare Disease Day website on your social media
  4. Change your profile picture to our CHARGE Awareness graphic
  5. Print and have your child color the rare disease zebra to show their stripes
  6. Start a Facebook Fundraiser in honor of the day


Watch Alainey's Story



Young boy in a striped shirt and glasses sits in a chair.


Read Alden's Story



Toddler boy with dark brown hair looks up, wearing a Born Wild t-shirt.


Read Alexander's Story




Read Alyssa's Story



Adorable baby girl with a bow in her dark brown hair, in pink glasses, wearing a pink outfit, smiles at the camera.


Read Bria's Story




Read Carson's Story



Baby boy with a trach sits on the beach.


Read Elliot's Story



Young girl with brown hair wearing a striped shirt and a black bow in her hair.


Read Francesca's Story



Happy teen girl with short brown hair and glasses poses with a lion mascot on a football field.


Read Grace's Story




Read Itay's Story



Baby boy with CHARGE syndrome has a trach, wears a striped outfit, and sits in a chair.


Read James' Story




Read Nicholas' Story



Young boy in black sweatshirt, with black hair, poses at table with cell phone in hand.


Read Parker's Story



Girl with long blonde hair and glasses in a pretty yellow dress with sandals poses outside.


Read Reese's Story



Young man in sunglasses poses outside the Rose Bowl stadium signing "I Love You", wearing a 5k Run bib.


Read Reuben's Story



Photo of young girl with glasses holding a sign that says "Jesus Loves Me' between her parents.


Read Sami's Story



Teenage boy with CHARGE syndrome in a black shirt with a pink necklace.


Read Thor's Story




Read Tyler's Story



Photo of teenage girl in glasses wearing a shirt with a zebra on it that says Care About Rare - CHARGE syndrome.


Read Vivian's Story