• A world of sensations: Bruna’s story

    Bruna is 12 years old and is affected by an ultra-rare genetic syndrome that causes severe refractory epilepsy , cognitive and motor retardation — she is not able to speak or walk — and severe visual
  • How do you comfort a child with a rare disease?

    Psychologically speaking, the relief from a chronic pain is more than necessary in order to help the patient carry on with this very difficult condition. In regards with a child with a rare disease ,
  • Effects on parents when a child has a rare disease

    In October 2011, author Emily Rapp wrote an outstanding essay on life as a rare disease parent and her experience of raising her son, Ronan, under the shadow of Tay Sachs disease for the New York
  • Àngels Ponce: «It never ceases to amaze me how children actually see illness and disability as natural things»

    S4R: It is difficult to know that a child is having a hard time if he/she does not express it. Often, the siblings of sick children prefer not to bother their parents with their problems if they
  • 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