Share4Rare

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)

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

Rare diseases affect less than 5 of every 10,000 people, with 80% being children. Share4Rare is born from the need to connect and join patients with rare diseases from all over the world. Our greatest

What is RareHacks? RareHacks is a hackathon event that brings you the opportunity to apply data science tools, including machine learning and natural language processing algorithms, to a real

When your child is diagnosed with a rare disease — or he/she is still undiagnosed —parenthood becomes harder than expected. You face complete uncertainty as you probably know nothing about that

Just as fake news seems to become an inevitable grudge whenever you look for news or information online, fake science is on the rise too, and it stirs up the rare disease community. Articles that are

Rare Disease Day is an international event whose objective is to raise awareness, improve treatment access and provide visibility for individuals suffering from a rare disease. Originally established

Having a child with a rare disease is never easy. It is hard to know what the future holds, there are only a few people like your child to learn from and, to make things worse, most of them are

On 11th December 2018, Rebecca Leary, EURO-NMD Project Manager and member of the TREAT-NMD Secretariat and Cathy Turner, DMD Liaison and TACT Coordinator at the John Walton Muscular Dystrophy Research