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Quality of life
Surgery and rehabilitation
Injuries and wounds
23 May 2019
Can children get melanoma?
Skin melanoma in children is very rare: out of 1.1 million children under the age of 4, less than 1 will be diagnosed with melanoma. For children under the age of 10, the number of melanoma cases has
20 May 2019
What is infantile myofibromatosis?
Infantile myofibromatosis (IM) is a rare benign soft tissue tumor, meaning it can grow wherever there is soft tissue – this includes many tissues in our body, the most prevalent areas are the skin and
17 May 2019
RareHacks: open registration!
The access of rare disease families to quality , curated information about a particular disease is difficult due to many factors, including data gathering, curation, quality or unbiased interpretation
15 May 2019
What causes myotonic dystrophy type 1?
Myotonic dystrophies are genetic disorders. They are systemic conditions, meaning they affect many systems in the body, not only the muscles. The genetic alteration that causes myotonic dystrophy is
13 May 2019
Why using Drupal strengthens one of the main goals of the Share4Rare platform: Empowerment
For those of you unlucky enough not to know what Drupal is, let us introduce it. Drupal is an open-source system for content management which has a worldwide community with over 500,000 (very active)
10 May 2019
What are the causes of neuroendocrine pancreatic tumors (pNETs)?
Genetic origin of pNETs As it seems, there are several risk factors that may make a child or adolescent more likely to develop a neuroendocrine pancreatic tumor or pNET . These risk factors are
08 May 2019
How to detect and tackle pseudoscience
Why do we tend to believe pseudoscience? We are at a time where many people are mistrustful of experts: in climate change, in politics, and to a certain degree in health care. Due to an expanding
07 May 2019
Share4Rare toolkit for rare advocacy
What is in it This practical kit shares best practices and tools that advocates have used to support innovation and offers practical advice on how to make a difference for rare disease patients. With
03 May 2019
Diagnosing and treating gliomatosis cerebri
What is a biopsy? A biopsy is an extraction of little samples of tissue that are to be checked under the microscope by pathologists . Tumors are biopsied in their origin, to assure that tumor cells
30 April 2019
Share4Rare Webinar VI: "How your data is processed in Share4Rare"
What we will talk about in this webinar Alex Perera , from the Polytechnic University of Catalonia , will explain how Share4Rare follows the European privacy regulation for the collection, usage and
29 April 2019
10 reasons to join Share4Rare
The use of internet as a health information source has increasingly grown in the last decades. Expressions like Dr. Google or google it , referring to the search for information aimed to clarify our
25 April 2019
Share4Rare: game changer in rare disease research
Share4Rare enables rare disease families around the world to connect, offering a secure social network that creates a safe haven for talking to peers and clinicians. The multi-tier validation
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