• Pulseras Candela: boosting childhood cancer research since 2013

    The Association Pulseras Candela was set in motion 7 years ago on the 8 th floor of Sant Joan de Déu Barcelona Children’s Hospital thanks to the unity, love and involvement of many families and
  • Aleksandra talks about her experience of caring for her children with rare neuromuscular diseases

    Aleksandra has two children affected by a rare neuromuscular disease . Her son has a diagnosis of limb-girdle muscular dystrophy type 2D ( LGMD2D) and her daughter has a diagnosis of collagen VI
  • Coronavirus and rare diseases — How can we reduce transmission and cope with a rare disease during these days?

    The new coronavirus outbreak is affecting people all across the planet, but there are communities who are especially vulnerable to this situation. We have learned that people over 60 — and this is
  • Share4Rare webinar VII: ‘Online Advocacy – Social Media & Valuable Tools’

    Learnings In this webinar, Bettina Ryll , Gilliosa Spurrier-Bernard and Violeta Astratinei from the Melanoma Patient Network Europe will share learnings and best practices from their work in patient
  • First Consensus Meeting of the Melanoma Patient Network Europe: What does a uveal melanoma guideline have to cover?

    First, what actually is uveal melanoma? ‘Uveal melanoma is a cancer that starts in the pigment-producing cells of the eye. It is one of the rare forms of melanoma as it only affects about 6 people out
  • 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.
  • 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
  • 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
  • Stories of the Share4Rare hackathon: helping patients and families to face rare diseases

    Share4Rare’s first RareHacks hackathon was celebrated on July 5-7th in Barcelona . In total, 45 participants were involved in building an innovative chatbot to solve the challenge regarding the
  • How to detect and tackle pseudoscience

    Why do we tend to believe pseudoscience? We are at a time where many people are mistrustful of experts: in climate change, in politics, and to a certain degree in health care. Due to an expanding
  • Share4Rare toolkit for rare advocacy

    What is in it This practical kit shares best practices and tools that advocates have used to support innovation and offers practical advice on how to make a difference for rare disease patients. With