• Share4Rare Webinar V: "How to Detect & Tackle Pseudoscience"

    Just as fake news seems to become an inevitable grudge whenever you look for news or information online, fake science is on the rise too, and it stirs up the rare disease community. Articles that are
  • Xeroderma pigmentosum, a journey against the sun

    Xeroderma pigmentosum : a patient’s story «He was 3 years old when he was diagnosed with Xeroderma pigmentosum ». “Little Josh” , as his mother liked to call him, had been born in a small town near
  • Rare Disease Day – Make your voice heard!

    Rare Disease Day is an international event whose objective is to raise awareness, improve treatment access and provide visibility for individuals suffering from a rare disease. Originally established
  • Share4Rare: facing patient isolation by boosting research on rare diseases

    Having a child with a rare disease is never easy. It is hard to know what the future holds, there are only a few people like your child to learn from and, to make things worse, most of them are
  • How to build an infrastructure for translational research

    On 11th December 2018, Rebecca Leary , EURO-NMD Project Manager and member of the TREAT-NMD Secretariat and Cathy Turner, DMD Liaison and TACT Coordinator at the John Walton Muscular Dystrophy
  • VISION-DMD App for boys with Duchenne Muscular Dystrophy

    The Vision-DMD project aims to advance and accelerate the clinical development of the orphan drug Vamorolone —also known as VBP15— for the treatment of Duchenne Muscular Dystrophy (DMD) in ambulant
  • Share4Rare Webinar IV: “Creating the infrastructure for translational research”

    On Tuesday December 11, 7pm CET , Share4Rare hosts a webinar that will describe the objectives, goals and achievements of the specialist network TREAT-NMD. Established in the neuromuscular field TREAT
  • Share4Rare had its place in the Informative Session for Patients and Families with Neuromuscular Diseases at Hospital Sant Joan de Déu Barcelona

    Last Saturday, October 27th, the Share4Rare project was presented at the 5th Informative Session for Patients and Families with Neuromuscular Diseases that is annually celebrated at Hospital Sant Joan
  • How to go from a good idea to a great one: a case study in co-creation

    The digital environment is shaping the way we interact and interpret the healthcare environment. It has the power to erase borders, overcome old challenges and bridge the gap between very different
  • Poster prize for Share4Rare!

    Share4Rare received an "Innovative project" prize on their poster the at the Better Medicines for Children Conference in Brussels! This conference is organized by the European Forum for Good Clinical
  • Share4Rare Webinar III: “Fundraising for Nonprofits”

    Nonprofit organizations are likely to have limited time and resources to accomplish maximum return on investment. Effective fundraising has the potential to increase donations, grants and gifts. This
  • The POWER-tool: a new effective method that helps involving patients in clinical trial design

    Research on rare diseases is often difficult to perform mainly because there are only a small number of cases to study, resulting in a vaguely representative statistical analysis of the data. For