• 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
  • Looking for patients with 6q25 deletion syndrome: Mia Regina's story

    Mia Regina is a 6-year-old girl born in Mexico DF with a rare genetic pathology: the 6q25 deletion syndrome . This syndrome was described approximately a decade ago and is characterized by — among
  • The research project for paediatric gliomatosis cerebri is already here!

    Some time ago we met Mónica , Izas's mum and president of the Spanish association of gliomatosis cerebri " Izas, la princesa guisante ". Her story is an example of courage, struggle and dedication.
  • Share4Rare Pilot for Rare Neuromuscular Diseases

    We are pleased to announce that we will soon be ready to start the research projects on the S4R platform. The ‘My Studies’ area will provide an opportunity for researchers to submit surveys to the S4R
  • A disease with no name: Edu’s story

    Sandra is Edu 's mom, a 5-year-old boy who suffers from a rare disease. When Edu was born he could not open his eyelids , but doctors did not find that a reason for not discharging him from hospital.
  • Share4Rare principles for co-creation with patients

    The clue is in the title. Patient engagement (PE) cannot happen without patients , and so it is clear that any materials, initiatives, or projects linked to patient engagement can also not happen
  • 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
  • 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,
  • 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
  • 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