Share Your Journey


Thank you for being willing to share your personal journey with the world. We want to hear from people diagnosed with idiopathic hypersomnia and related disorders, as well as their supporters! Everyone has a story to tell that will resonate with someone else. Here are some personal journey topic ideas to get you started. Feel free to select one of these, or to use one of your own. Then, complete the form below. You can also apply to match with a medical student who wants to learn more about living with a rare disease: Global Genes RARE Compassion Project.

  • The path to a proper diagnosis
  • The bravest moment of your life
  • What makes your supporters special
  • Why you can succeed in life
  • The experience of being lifted up by a supporter
  • A surprising turn of events you experienced
  • If you could change someone’s hypersomnia experience
  • If you could have a do-over
  • Words that prompted hope
  • Your favorite time with family
  • An awkward social moment
  • A brain fog story
  • The journey as a supporter

Your story should be approximately 500 words in length.

I grant to The Hypersomnia Foundation, the right to use, reproduce, and/or publish photographs and/or video and/or writings that may pertain to me—including my personal journey written story, image, likeness and/or voice without compensation in connection with the Sharing My Journey response. I authorize The Hypersomnia Foundation to copyright, use and publish the same in print and/or electronically. Please note that The Hypersomnia Foundation retains the right to edit all submissions, including personal journey submissions. I agree that The Hypersomnia Foundation may use such writings, photographs and/or video of me with or without my name and for any lawful purpose, including for example such purposes as publicity, illustration, advertising, SomnusNooze, and Web Page content. This authorization is continuous and may only be withdrawn by my specific rescission of this authorization. Consequently, The Hypersomnia Foundation may publish materials, use my initials and city/state and/or country of my location, photograph and/or video, and/or make reference to me in any manner that The Hypersomnia Foundation deems appropriate.

Thank you!

We will review your submission and get back to you if necessary.


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The Hypersomnia Foundation makes no representations or warranties about the satisfaction of any government regulations requiring disclosure of information on prescription drug products. In no event shall The Hypersomnia Foundation be liable for any damages (including without limitation incidental and consequential damages) or costs (including without limitation attorney’s fees) based on any claim arising from the use of this website and/or its content.