This is from NORD - National Organization for Rare Disorders - get involved and tell your story too!
Tell Your Story
Reading about the experiences of real people helps others understand what it’s like to have a rare disease. If you would like to share your story, submit a few paragraphs or up to 500 words to NORD in the form below. We can’t guarantee it will be published but we will share as many of these stories as possible on our own website or through other media. Please understand that if you share your story, you give NORD the right to publish it on our website or share it with others, including the press, who may contact us seeking stories to illustrate what it’s like to live with a rare disease.
These are some suggestions on elements you may want to include in your story:
◦What process did you (or your child) go through in order to receive a diagnosis?
◦What problems/challenges do you (or your child) experience as a result of your condition?
◦How do you cope with the challenges you (or your child) face?
◦What are your hopes for the future?
◦Is there a message that you’d like to impart to others who are struggling with a rare disorder?