Hospital Sant Joan de Déu
Sharing to move ahead

Benefits and commitments


The Rare Commons platform allows access to a safe and secure environment under the supervision of the Sant Joan de Déu Hospital. The goal is to offer appropriate resources to encourage the development of biomedical knowledge, in cooperation with you, the family members of patients affected by rare diseases.

To this end, we request a commitment from you to:

  • Cooperate in the investigation of the disease by providing clinical data and personal experiences in the care of your family member.

  • Suggest topics and questions that will help us identify the real needs of the children and to prioritize our research so as to best improve your quality of life.

  • Provide access for us to your physicians so that we may put together a working medical community with exhaustive data in order to facilitate our labor.

For our part, the benefits that we hope to attain for you include:

  • Improved competence in the management of the disease with information that is accessible, simple, and clear, but also rigorous.

  • Putting into practice a model of participative research in conjunction with your family physicians, thereby contributing to greater understanding and improved care for your children.

  • Close monitoring of the evolution of each patient while constructing a model for detailed description of the natural course of the illness and the individual needs of each child.

  • Interaction and collaboration with other families by means of participation together in a community and the creating of genuine support groups.

You make our research possible!

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