rare disease day

“'Give her time and she’ll surely catch up,' they said. 'She’ll be fine.' ... When Dalia was 9, she lost her ability to walk, talk, eat, and breathe without a ventilator."
But they are there. They are hopeful. The feeling that I have never, ever belonged to another person as I belong to Esmé
Give yourself a break. Don't feel guilty. Don't blame yourself and don't blame your husband. Don't blame the move to London or that you sometimes drank unfiltered tap water -- or a glass of wine. Don't blame the cups of coffee. Don't blame EU emissions standards. Do not blame Tony Blair.
*** When I was much younger there was an organization called Science for the People, and I don't know what happened to that
My family did not have other families to talk with, or survivors to hear from. I couldn't explain the pains I was feeling to anyone who understood what I was talking about. At the time, there was only one doctor we found to consult with, and he had very limited knowledge on the subject.
A rare disease is defined by the National Institute of Health (NIH) as any disease that affects less than 200,000 people at a given time.
I couldn't read, "I love you, right up to the moon and back," without thinking that the moon would always be there, but my child would not.
Every year Rare Disease Day takes place across the world and brings together anyone affected by a rare disease, patients, their families and caregivers. It also serves to raise awareness of rare diseases among policy makers, industry, researchers and health professionals.