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Hear Rare Roar Patient Project

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What is the Hear Rare Roar Project?

As part of Rocket’s efforts to raise awareness for rare disease, especially Fanconi Anemia, Danon Disease, Leukocyte Adhesion Deficiency-I, Pyruvate Kinase Deficiency and Infantile Malignant Osteopetrosis, we have launched the Hear Rare Roar Project. The purpose of this project is to bring important and impactful stories about patients’ and families’ experiences with their rare disease  to the forefront and spread awareness for these diseases. Interested in participating and being featured on Rocket’s website? Read more below, and click here to submit!

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Patient and Family Photo Crowdsourcing

Interested in having your photo featured on our website and on social media? Submit your favorite photo, along with a note about why your photo perfectly captures your experience with your rare disease. Be creative!

 Click here to submit.

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Patient and Family Story Submissions

Not sure about having your photo featured but interested in sharing your story? Write a letter about your experience to help others understand how it feels to live with a rare disease. This can be addressed to your disease, to the team at Rocket or to the broader community. Whatever feels most comfortable for you! Letters will be shared on Rocket’s social media channels.

 Click here to submit.

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Patient and Family Video Submissions

Interested in sharing your story via video? Record a 1-4 minute long video of you talking about your experience. Videos will be featured on Rocket’s social media channels.

Click here to submit.