• What is it like to have a sibling with a rare disease?

    Taking care of a loved one who is chronically ill, having a highly disabling pathology such as a rare disease, can be as rewarding as it is difficult and stressful . This kind of diseases entail for
  • 10 things a parent of a child affected by a rare disease wishes everyone knew

    We worry we will bore our friends with our concerns over our child’s disease, and when you say “ Do you want to talk about it ?” “ How are you feeling? Are you coping? ” it really helps us feel like