Blog

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

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

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

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)

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

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

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

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

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

The 229th ENMC international workshop, entitled ‘Limb Girdle Muscular Dystrophies – Nomenclature and reformed Classification’ took place from the 17th to the 19th of March 2017 in Naarden (The

Amyotrophic lateral sclerosis: a patient’s journey «It was a sunny Sunday morning in the middle of September. Amy was playing in the local playground under the watchful eye of her parents, trying to

The main aim of the WDO Member Meeting was to gather patient organizations, scientists, researchers and experts working in the Duchenne field to share and build on each other’s knowledge to create