• 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
  • Wednesday is Share4Rare User Day

    In 2020 hundreds of people from 50 countries were connected in the Share4Rare community. The pandemic has forced us to include technology in our day to day life and you may have some doubts about the
  • The bright side of 2020: what we have done and achieved in Share4Rare

    The New Year began with the launch of a research project aimed at studying the long-term adverse effects of paediatric acute lymphoblastic leukaemia, which was added to the pilot projects opened in
  • Report - 3rd day of the International Congress on the Effects of COVID-19 in People with Rare Diseases

    The challenge of undiagnosed patients: challenges and needs Dr. Marcelo Andrade opened the first table of the third day of the congress. This paediatrician at the Sant Joan de Déu Hospital explained
  • Report - 2nd day of the International Congress on the Effects of COVID-19 in People with Rare Diseases

    Emotional support to the affected people: the role of patient organizations and virtual communities Roberta Anido de Pena (president of FADEPOF) opened the session with a panel that discussed the role
  • Report - 1st day of the International Congress on the Effects of COVID-19 in People with Rare Diseases

    The opening of the congress was led by Patricia García, medical director of the Garrahan Hospital, a reference centre for rare diseases in Argentina. García explained the challenge that COVID-19
  • An Interview with Marjolein van Kessel — President of Naevus Global

    Thank you, Marjolein, for taking the time to be interviewed! Could you please give us a bit of background about congenital melanocytic naevi and the issues associated with them? A congenital
  • Duchenne Patient Academy 2020: a leading worldwide patient advocacy event on neuromuscular conditions

    Duchenne Patient Academy works in partnership with leading DMD patient organisations to set a strong patient advocacy base for patient organisations and the Duchenne and Becker community at large. We
  • International Congress on the Effects of COVID-19 on People with Rare Diseases

    The International Congress on the Effects of COVID-19 on People with Rare Diseases will be held on November 9-11th 2020 and it is organized by the Sant Joan de Déu Barcelona Children's Hospital
  • The EMA launches a public consultation on registry-based studies

    A few weeks ago we published a blog explaining what a patient registry was. These databases enclose quantitative and qualitative data about patients who affected by a particular condition, like for
  • The case of undiagnosed profiles in Share4Rare

    Share4Rare has very nice support for patient profiles with a diagnosis. These users will find that Share4Rare is a system in which they can interact, communicate, and share knowledge with other users