Share4Rare and CIBERER join forces to identify patients with rare diseases
CIBERER and Share4Rare have established a collaboration agreement to boost rare disease research. As a secure digital platform open to patients and caregivers from all over the world, Share4Rare
RDI and EURORDIS Webinar: The Fundamentals of International Advocacy for Rare Diseases
Sometimes we want to give a helping hand, but we are not sure where we should be focusing our efforts. To fight for patients and caregivers' rights, rare disease advocates must learn basic skills and
Sheonad Macfarlane, mum of a girl with SMA: “Over time, you become an expert on your child’s condition”
“Eilidh was a perfect little baby. She reached her milestones on time until she started - then promptly stopped – crawling. Eilidh wasn’t moving like other 10-month-old babies: she now hated being on
The new “People Like Me” version in the Share4Rare platform
The goal of Share4Rare is to advance the knowledge of rare diseases through collaborative intelligence. This approach assumes a philosophy based on equity, in which the more information the user
Tips for preparing your summer holidays
Many families will have already started the summer break period. Occasionally, if you do not prepare on time everything you need for your trip, holidays can be more of a nightmare than a period of
Rare Diseases Hub Ukraine in response to rare pathologies
It is estimated that there are around 2 million patients in Ukraine suffering from rare diseases. This situation has been exacerbated by the crisis resulting from the war. Rare diseases affect 5 out
Genes, chromosomes and chromosomal anomalies
First things first: What are genes and chromosomes? Our body is made up of millions of cells and most of these cells contain a complete set of genes. Genes are like a set of instructions that control
Toxic agents, radiation and microbes: non-genetic factors that can cause a rare disease
Approximately 80% of rare diseases have a genetic origin and are present at birth. However, rare diseases are not always caused by a de novo mutation —occurred spontaneously during reproductive cell
What is a patient registry?
A patient registry collects information about patients who are affected by a particular condition. Registries are databases containing quantitative and qualitative data about the patients. In rare
«The role of Pediatric Palliative Care Units is key to give visibility to siblings of sick children inside the family»
S4R: What does it mean to receive palliative care? Which kind of attention do these children receive? PPCU: Pediatric palliative care is defined by the WHO as the active and total assistance of the
