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Rare Disease Day 2024
February 29
By taking part in Rare Disease Day you help provide a greater understanding and acceptance of cystinosis and living with a rare disease. You may even find speaking out about cystinosis empowering. Either way, we thank you for being a part of our community and considering taking part in this important day. Here are a few examples of how to get involved:
- Share your story with the official Rare Disease Day sponosors here
- Sign up for Rare Disease Week on Capitol Hill in Washington, DC. Virtual sessions are also available
- Talk with a friend, teacher or loved one about living with a rare disease. Resource materials can be found here including presentations for younger children
- Get social; post something personal or leverage the Rare Disease Day Toolkit downloads to raise awareness
- Join the Rare Action Network, Light Up for Rare or Show Your Stripes Campaigns lead by the National Organization for Rare Disorders (NORD)
- Show support – for yourself or a loved one. The CRN provides special programming and assistance year-round. Discover what is available at no cost to you here
- Participate in research. Check the Research tab for open studies including an online Quality of Life study currently looking for U.S. volunteers
