• EURO-NMD – An overview of European Reference Network for neuromuscular diseases

    A staggering 7000-8000 rare diseases affect the daily lives of around 30 million people across the European Union. Even though EU citizens benefit from improved access to healthcare throughout the
  • New Share4Rare webinar: “International patient registry for rare diseases and COVID-19”

    On September 18th Share4Rare organizes a webinar along with the Garrahan Hospital from Buenos Aires (Argentina) to present the new international patient registry that will be created in the platform
  • World Duchenne Awareness Day 2020: Duchenne and the brain

    Learning and behavioural challenges in DMD and BMD Both conditions are characterised by progressive muscle breakdown. A certain part of the DNA is missing, duplicated, or changed so the code cannot be
  • 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