Introducing Voices from the Rare Community

September 25, 2018


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

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