Share your story

We are a community united to change lives. To give hope. To inspire.

YOU have a powerful story to share.

Please help build our inspiring collection of stories by sharing some aspects of your journey that you think can help other families.

Benefits to Sharing Your Story

It is not just the telling or writing it down, but knowing that what you write will be read by others and the hope that by sharing in a public way, someone else might be inspired or helped by your story. It is also a great way to encourage others to talk about what they're experiencing.

Here are some of the benefits that seem most important:

  1. Realizing that sharing your story can help others.
  2. Finding your voice.
  3. Re-affirming your values.
  4. Finding peace, finding hope.

Need help, and examples, to be inspired?

Visit the Global Genes Tookit dedicated to Using Storytelling to Raise Awareness for Your Rare Disease. You will find examples of different storytelling methods and helpful tips on how to put together your story. In addition, to a very supportive resource guide dedicated to creating your story. As well as, patient stories available at RARE daily.

Share Your CDG story today!


Page modified at Friday, April 17, 2020 - 12:38