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.

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