International Alagille Syndrome Awareness Day

International Alagille Syndrome Awareness Day

As we prepare for ALGSAwareness Day, we want to hear from you, our families! What does awareness mean to you and what experiences would you like to share with other families, researchers and the general public about your journey with rare disease and ALGS? Thank you for sharing your story and your voice as we launch the very first International Alagille Syndrome Awareness Day! January 24, 2020

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* 1. As a newly diagnosed family, what are the top things you would like other families to know?

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* 2. As a newly diagnosed family, what was the one thing you needed to help ease the burden of your ALGS journey?

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* 3. What is the best piece of advice you have received along the way?

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* 4. What are the top things you would like researchers to know about Alagille Syndrome?

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* 5. What do you think is misunderstood about rare disease and specifically about Alagille Syndrome?

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* 6. What would you like people not associated with rare disease to understand about living with Alagille Syndrome?

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* 7. If you had only one minute to explain Alagille Syndrome and tell your story to a stranger, what would you say?

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* 8. What are the best tools or resources for spreading awareness about Alagille Syndrome to other families, to researchers and to the general public?

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* 9. Is there anything else you would like for us to consider for Alagille Syndrome Awareness Day?

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* 10. Please leave your name and contact information so that we may properly quote you. If you do not wish to be named, please just leave this question blank.