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 userTips 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 ofRare 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 outGenes, 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 controlToxic 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 cellShare4Rare webinar: “Paediatric palliative care in rare diseases”
We are dedicating the next Share4Rare webinar to a topic of great interest to a large part of the community of people affected by a rare disease: palliative care. This type of care is a commonWhat 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