• 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
  • An interview with Manuel Rodrigues — Expert in conjunctival melanoma

    General information on conjunctival melanoma Conjunctival melanoma (ConjMel) is an adult ocular melanoma arising from conjunctiva, the visible ocular extern mucosa covering not only the anterior part
  • 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
  • Meeting the partners — UPC. How technology is used to connect and educate the rare disease world.

    Universitat Politècnica de Catalunya – BarcelonaTech (UPC) is a public institution for research and higher education in engineering, architecture, sciences, and technology. By providing solid
  • The Share4Rare research project on neuromuscular rare diseases: analysing how the disease affects employment and education

    The Share4Rare platform is growing in strength, with over 900 users validated since April 2019. This growing community of rare disease patients and families is providing a secure environment for
  • 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
  • The international patient registry for COVID-19 and rare diseases is now available for clinicians

    People with a rare disease are vulnerable, but this vulnerability is currently being exacerbated by the global COVID-19 pandemic. Sant Joan de Déu Barcelona Children’s Hospital, together with the Sant
  • 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
  • Meeting the partners — Òmada Interactiva

    The approach of Òmada was classic, yet revolutionary. After conducting a preliminary analysis and benchmarking, the initial graphic, functional and technological design of the open layer of the
  • 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