Tips for taking care of young caregivers. Let’s help those who help.
Young and adult caregivers’ emotional and physical health are usually highly affected: anxiety, depression or feelings of isolation, lack of physical activity, unhealthy eating habits, etc. In this
What is life like for kids with rare genetic conditions?
Studies have shown that chronic and rare disease may affect the psycho-social well being of children and also their families. The physical symptoms can be very difficult to handle for a child in early
How to tell your child about his/her rare disease
Rare chronic diseases are common enough, affecting 6-10% of the population and have a great negative psychological and physical effect on patients and their families. Men, women but also children may
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 we