• What is a patient registry?

    A patient registry collects information about patients who are affected by a particular condition. Registries are databases containing quantitative and qualitative data about the patients. In rare
  • Virtual coffee with patient organisations and Share4Rare: 'Advancing a Patient-Centric Research Agenda'

    Research is at the heart of solutions for all patients. However, it is not always conducted with the patient in mind. Patient organisations are increasingly invited to submit evidence to healthcare
  • Share4Rare Webinar: ‘FAIRness of Data in Rare Diseases’

    Rare disease patients tend to be more in favour of sharing health related data than the general population. A recent study from EURORDIS’ Rare Barometer survey shows that 97% of rare disease patients
  • Free access to this year’s ASCO for patients - Register now!

    The annual congress of ASCO (American Society for Clinical Oncology) is the world’s largest oncology meeting. Last year over 30,000 people attended! ASCO is one of the congresses where the very latest
  • A patient story — "How my daughter was diagnosed with in situ melanoma"

    Irina, thank you for telling us about your daughter’s story. If I am to talk about what happened to us, I could tell you that we have taken our daughter to a private clinic rather by chance, not
  • Receiving a cancer diagnosis is always bad. But receiving a rare cancer diagnosis adds to the challenge.

    Ocular melanoma is a rare form of melanoma and starts in the pigment-producing cells of the eye. About 6 out of a million people will be diagnosed with ocular melanoma every year, the large majority
  • Gathering people’s knowledge on cell and gene therapy to create tailored educational materials for patients and citizens

    Being educated on health sciences can bring you numerous benefits as a regular citizen, especially if your are a patient or a caregiver: this way you will be more empowered on and will be able to
  • Patient organizations can now register in Share4Rare!

    In a global world in which relationships are built, grown and consolidated in digital environments, the active presence of patient organizations is key. In order to tackle this need, detected through
  • FEDER Rare Disease Information and Orientation Service (SIO): building bridges to improve the lives of the patients

    For two decades, the Spanish Federation of Rare Diseases (FEDER) has been giving voice to more than 3 million people who live with a rare pathology in Spain. At the present time, the association
  • Share4Rare Webinar VIII: ‘State of the Art of Rare Disease Activities in Europe’

    The Resource on the ‘State of the Art of Rare Disease activities in Europe’ is a well-established resource providing valuable, detailed information for all stakeholders in the field of rare diseases
  • Pulseras Candela: boosting childhood cancer research since 2013

    The Association Pulseras Candela was set in motion 7 years ago on the 8th floor of Sant Joan de Déu Barcelona Children’s Hospital thanks to the unity, love and involvement of many families and friends
  • 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