Share4Rare Team

RareHacks: open registration!

Two people writing on a board, one of them holding a laptop
Share4Rare is hosting an innovative hackathon this July in Barcelona and we want you to participate.

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.  Research towards these goals is difficult to achieve, due to the small prevalence when compared with more common diseases.

The Share4Rare initiative proposes a collaborative effort to gather information of these diseases throughout joint actions. In Share4Rare you are offered to donate your data to increase the knowledge about a specific rare disease, with the aim to improve the available scientific information and the real world evidence.

The project is based in the principles of collaboration and cooperation. All the people can be involved, beyond to be a patient, relative or a researchers. We invite you to donate your skills! Help us through the RareHacks hackathon.


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 biomedicine case that will contribute to help families suffering from rare diseases. You will contribute to the design of a chatbot who will be able to answer questions about rare diseases. And you can register starting from today!

You can join as a team or individual. Teams will be composed of multidisciplinary profiles of five individuals. Encouraged profiles are:

  • Clinical Profile: responsible of curating and annotating the material, evaluating the outputs and advising in the overall design. Compatible profiles are medical doctors, biomedical engineers, biologists and alike.
  • Computer Science Profile: responsible of giving support on data interfacing, components, coding strategy, code analysis and organization. Compatible profiles are computer scientist and engineers.
  • Data Science Profile: responsible of giving support on the data science field. Compatible profiles are physicists, mathematicians, statisticians.
  • Patients and caregivers: patients affected by a rare disease or relatives that know well their condition, to bring their vision and objective to RareHacks.

Donate your skills and help our families! You can follow the updates about this initiative through the Share4Rare social medial channels and also through the RareHacks profile on Instagram. We invite you also to spread the word about this event that will benefit the community of patients and families involved in the Share4Rare platform. Together we are stronger!

Register here and join us in Barcelona on July 5th-7th.