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I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?

  1. It’s a constant struggle, physically and mentally

    1. , this is very true! I think others can forget that a rare disease rarely takes a day off!

      Best, Erin, Team Member.

  2. That it's unpredictable!

    1. , definitely! This would be a great fact for people to know about living with a rare disease. Thanks for joining the conversation.
      Best, Erin, Team Member.

  3. It changes day to day and even minute to minute.

    1. , boy, isn't that the truth!

      Best, Erin, Team Member.

  4. It's unpredictable. Rare=limited information.

    1. , yep! I think you hit the nail on the head!

      Best, Erin, Team Member.

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