• World Duchenne Awareness Day: "Together, we are stronger"

    This year's awareness campaign ‘Together, we are stronger’ was translated in 15 languages and collected over 1,000,000 views globally. This impressive number was reached due to an amazing
  • Data for a difference — The Share4Rare research feature for patient organisations

    Violeta Astratinei is a Ph.D. biologist with a background in environmental research. After she lost her sister to melanoma in 2014, she became a core member of Melanoma Patient Network Europe, MPNE
  • Gemma Marfany: "Researchers, patients and families must come together to fight rare diseases"

    Gemma Marfany is a professor in the Department of Genetics at the University of Barcelona (UB) and head of Unit U718 at CIBERER, the Spanish biomedical research centre for rare diseases. She is also a
  • 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
  • Between hype and hope: the truth about gene therapy and genome editing in Duchenne muscular dystrophy

    About Duchenne muscular dystrophy Duchenne muscular dystrophy (DMD) is the most common form of muscular dystrophy affecting around 1 in 5,000 newborn boys worldwide. The main characteristic is a
  • Smart Tech: Improving the lives of millions living with a long-term disease

    Chronic diseases present a significant challenge to the European Union, costing over €700 billion annually and affecting one third of all adults. Furthermore, each year over 4 million people pass away
  • Meeting the partners — John Walton Muscular Dystrophy Research Centre

    Dr. Michela Guglieri is Honorary Consultant in Human Genetics and is working as a Neurologist and Senior Research Associate at the John Walton Muscular Dystrophy Research Centre (JWMDRC). Upon
  • Interview to Daniela Robles-Espinoza, researcher and expert in acral melanoma

    Dr. Daniela Robles-Espinoza, from International Laboratory for Human Genome Research (LIIGH) on the National Autonomous University of Mexico (UNAM), is an expert in acral melanoma, a very rare form of
  • Exercise in neuromuscular disorders: a moving topic

    Nicole Voet is a rehabilitation physician and scientific researcher in the Rehabilitation Centre Groot Klimmendaal in Arnhem and in the academic medical hospital Radboud University Medical Centre in
  • New webinar — Patient advocates fostering research in oncology: the Share4Rare experience

    One of the pillars of Share4Rare is to enhance collaborative research. For that purpose, at the end of 2019 the platform started piloting four research projects concerning several groups of rare