What is Rare Disease Day?

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

More information can be found on the official Rare Disease Day website here.

Sunny’s Charity Stream:

I’ll be hosting a charity stream on YouTube to raise awareness for Rare Disease Day. I’ll read aloud patient stories found on the official Rare Disease Day website and encourage viewers to donate to causes that benefit patients living with rare diseases. During the stream, I’ll also work on some artwork and play some casual video games to pass the time while chatting with viewers about their own experiences with rare diseases, and just generally discussing the topic. I’ll also host a few giveaways for free Steam game keys which viewers can enter just by joining in the conversation (Games TBA)! I have a separate page with more details on the stream schedule, which you can view here.

Official NORD Events

The National Organization for Rare Disorders (NORD) has virtual events planned in most states through their Rare Action Network. You can find and register for your state’s virtual Rare Disease Day event on RareAction.org.

You can find a complete list of all known official Rare Disease Day events here.

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