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
Cancer therapies assessment indicators need to be reviewed according to a novel study
A recent publication on JAMA Internal Medicine refutes any association between progression-free survival (PFS) and health-related quality of life ( HRQoL) in cancer patients. In other words, delaying
How to guarantee quality in translational research for neuromuscular diseases
It is not easy to go from basic drug research to clinical trials on humans, and for rare neuromuscular diseases the scenario is even harder. Besides, not always all the projects arrive to the human
Share4Rare Webinar II: “Following Scientific News for Patient Advocates”
Patient advocates are in contact with many patients and increasingly involved stakeholders in the health debate. Understanding the latest scientific findings in their respective fields helps advocates