• Share4Rare. A platform as strong as its users

    As you might already know, Share4Rare is a safe space where patients and carers can connect , share knowledge , and get involved in scientific research . It is a place where geographical, physical or
  • The conceptualization of the Share4Rare brand

    A few months after arriving at Òmada , general director Inma Chapí presented us a new project that we were going to address from the very beginning: an exchange platform for rare disease patients and
  • Sheonad Macfarlane, mum of a girl with SMA: “Over time, you become an expert on your child’s condition”

    “ Eilidh was a perfect little baby. She reached her milestones on time until she started - then promptly stopped – crawling. Eilidh wasn’t moving like other 10-month-old babies : she now hated being
  • «The role of Pediatric Palliative Care Units is key to give visibility to siblings of sick children inside the family»

    S4R: What does it mean to receive palliative care? Which kind of attention do these children receive? PPCU: Pediatric palliative care is defined by the WHO as the active and total assistance of the
  • We are looking for Share4Rare ambassadors!

    Adult rare disease patients and their family members become experts in finding medical information, supporting research initiatives and leading patient organizations. For the most ultra-rare diseases,
  • 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
  • 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
  • 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