• 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
  • 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
  • When the sun is your enemy: Pol’s story

    When Pol was only two months old, the first sunburn appeared on his face. Shortly after, similar injuries began to show, major burns in those areas of his body that were not protected by clothing,
  • The role of social media on health communication

    In the time since they first emerged in the early 2000s, social media have truly become the norm. Today they are widely used by individuals and businesses to communicate and stay connected; indeed,
  • Asia, Latin America and Europe unite and acknowledge the need for a global strategy in the field of rare diseases

    On October 19 th to 21 st , the APARDO summit joined together patient advocates from 17 countries around the world, and its goal was to share all the current worldwide rare disease scenarios and to
  • 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.
  • 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,
  • 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 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
  • WDO Member Meeting

    The main aim of the WDO Member Meeting was to gather patient organizations, scientists, researchers and experts working in the Duchenne field to share and build on each other’s knowledge to create
  • CPMS Platform for European Reference Networks (ERNs)

    European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe who aim to tackle complex or rare diseases and conditions. There are 24 ERNs involving 25 European