• 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
  • TREAT-NMD / EURO-NMD Neuromuscular Translational Summer Schools: showing all the dimensions of neuromuscular diseases

    The first Neuromuscular Translational Summer School took place in July 2018 in Newcastle upon Tyne, UK. The Summer School was the result of a collaborative effort between TREAT-NMD and EURO-NMD to
  • How to learn more about undiagnosed diseases thanks to the involvement of diagnosed patients in Share4Rare

    Diagnosing a rare disease can be a highly complex mission and it often requires great amounts of time. In many cases, several years pass until a correct diagnosis is confirmed by medical evidence. It
  • An international congress to be held in Barcelona will boost research in infantile gliomatosis cerebri

    The III International Congress for Research on Infantile Gliomatosis Cerebri will be held in Barcelona next September 22nd and 23rd, and it is organized by Izás, la princesa guisante (Spain) and co
  • 5 things to know about parenting a child with a rare disease

    Becoming a parent is a challenge and a new chapter for anyone, no matter what the circumstances. There are so many new things to learn, experience, get the hang of and deal with. Add a rare disease
  • 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
  • Some ideas behind the technical design of Share4Rare

    Having a black screen as your main tool of trade entails a number of things. One such thing is that you tend to be seen as a mere facilitator, someone whose work is limited to putting the ideas others
  • 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
  • Share4Rare criteria for meaningful patient involvement in clinical research

    Patient involvement in medicines development continues to grow, as all stakeholders involved in developing accessible medicines realize they should be involving the end customer - the patient - from
  • Tips for preparing your summer holidays

    Many families will have already started the summer break period. Occasionally, if you do not prepare on time everything you need for your trip, holidays can be more of a nightmare than a period of