• RDI and EURORDIS Webinar: The Fundamentals of International Advocacy for Rare Diseases

    Sometimes we want to give a helping hand, but we are not sure where we should be focusing our efforts. To fight for patients and caregivers' rights, rare disease advocates must learn basic skills and
  • An educational guide to building your online patient registry

    One of the main challenges when researching rare diseases is there is not enough available information about how the condition affects patients. This is mainly because there are not enough patients
  • A patient-turned-researcher advocates for transparent science in rare disease research

    Richard Rui Yang is a Hong Kong-based researcher affected by Bietti crystalline dystrophy (BCD), a rare retinal degeneration disease characterised by small sparkling crystalline deposits in the
  • Challenging endings, hopeful beginnings

    The last two years of the Covid pandemic have made everyone reflect on the flow of time, moreso those of us who are raising children with life-limiting and rare conditions. Time is precious to us
  • 7 tips to organise a successful global online training for your rare disease community

    Organising a training on a global scale can seem daunting at first. But when done right, you have created a connected community and move forward with a joint strategy that can benefit all. Are you
  • Try these 5 tips to strengthen your patient advocacy effort

    The following steps will help you set the groundwork on which to build and maximise your chances of success. In the Share4Rare Toolkit for Patient Advocacy, we explain exactly how to do this practice
  • Patient advocates: this toolkit should be on your holiday reading list

    “The Share4Rare Toolkit for Patient Advocacy is a very well-designed toolkit that helped me a lot. It gave me the much-needed organisational support and ideas, and ways to innovate my practice. Mainly
  • Interview to Verónica Zofío — Affected by lymphangioleiomyomatosis

    Verónica Zofío is the marketing manager of an environmental laboratory. She is 40 years old and was born and raised in La Vall d'Uixó, Castellón (Spain). Six years ago she had a pneumothorax
  • Share4Rare End Event: setting the path for next generation data sharing in rare diseases

    Rare disease patients and their families have the right to be part of a community, wherever they are in the world. It is equally important that research that is performed will benefit the patient
  • Meeting the partners — The Synergist

    They say it takes a village, and the rare diseases community is just that - a tight knit group with a sense of camaraderie and fellowship. This is the power of Share4Rare - creating a platform where
  • Meeting the partners — Sant Joan de Déu Research Foundation

    “Starting in 2015, we have a dedicated department to include patients and caregivers in research projects”, explains Begonya Nafria, the hospital’s Patient Engagement in Research Coordinator. “This
  • Meeting the partners — World Duchenne Organization

    The World Duchenne Organization (WDO) is one of the two patient organisations joining Share4Rare as project partner. Dimitrios Athanasiou, WDO board member and father of a boy with Duchenne, did not