Meeting the partners — John Walton Muscular Dystrophy Research Centre
Dr. Michela Guglieri is Honorary Consultant in Human Genetics and is working as a Neurologist and Senior Research Associate at the John Walton Muscular Dystrophy Research Centre (JWMDRC). UponInterview to Daniela Robles-Espinoza, researcher and expert in acral melanoma
Dr. Daniela Robles-Espinoza, from International Laboratory for Human Genome Research (LIIGH) on the National Autonomous University of Mexico (UNAM), is an expert in acral melanoma, a very rare form ofExercise in neuromuscular disorders: a moving topic
Nicole Voet is a rehabilitation physician and scientific researcher in the Rehabilitation Centre Groot Klimmendaal in Arnhem and in the academic medical hospital Radboud University Medical Centre inNew webinar — Patient advocates fostering research in oncology: the Share4Rare experience
One of the pillars of Share4Rare is to enhance collaborative research. For that purpose, at the end of 2019 the platform started piloting four research projects concerning several groups of rareASCO 2020 — Free learning opportunity for patients!
ASCO Annual Meetings are great opportunity for healthcare professionals and patients advocates all over the world to follow the latest scientific news in cancer research. Exceptionally this year, inIn pursue of the discovery of DUX4 small molecule repressors: how long is the path to the clinic in FSHD?
Facioscapulohumeral muscular dystrophy (FSHD) is the second most common form of muscular dystrophy affecting 1 in 8,333 individuals worldwide. The disease is characterized by progressive andNew registry to better understand how COVID-19 affects people with rare diseases
In the current global pandemic due to COVID-19, patients affected by a rare disease are a doubly vulnerable group: on the one hand, many of the rare pathologies put patients at a higher risk ofWhy is understanding the natural history of a disease so important?
We are currently in the middle of a global pandemic caused by the new SARS-CoV-2 coronavirus, which causes a disease (COVID-19) that was completely unknown a few months ago, even to the medical andVirtual coffee with patient organisations and Share4Rare: 'Advancing a Patient-Centric Research Agenda'
Research is at the heart of solutions for all patients. However, it is not always conducted with the patient in mind. Patient organisations are increasingly invited to submit evidence to healthcareShare4Rare Webinar: ‘FAIRness of Data in Rare Diseases’
Rare disease patients tend to be more in favour of sharing health related data than the general population. A recent study from EURORDIS’ Rare Barometer survey shows that 97% of rare disease patientsFree access to this year’s ASCO for patients - Register now!
The annual congress of ASCO (American Society for Clinical Oncology) is the world’s largest oncology meeting. Last year over 30,000 people attended! ASCO is one of the congresses where the very latestMaría Cecilia Foundation: improving the lives of families affected by childhood cancer
The María Cecilia Foundation was established in 1991 by a group of parents of children diagnosed with cancer. Through their experiences, they envisioned to give life to an organization that could help