RARE Daily is starting a new feature called Voices from the Rare Community and we’d like you to be a part of this. From time to time we’ll be posing questions and we’d like you to send us a video response.
For our first installment, here’s what we’d like you to do.
Film yourself or have someone film you and do the following:
- Tell us your name
- Tell us something about yourself
- Tell us the rare disease you or your loved one has
- Provide a brief description of the condition
- Tell us what you wish people would understand about living with a rare condition.
Videos should be one to two minutes in length. When you have finished your video, upload it to YouTube and then send the link to [email protected].
We’ll grab the embed code and post it on the RARE Daily site at raredaily.org

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