Share4Rare toolkit for patient advocacy



Patients are the heart of the Share4Rare project and they are represented in the consortium of partners. This toolkit has been developed after a hard work done by expert patient advocates having always on mind the needs that in general patients and relatives in the field of rare diseases can have.

The added value of the essence of this toolkit is that has been co-created by patients for patients. Having on mind this patient-centered approach the toolkit covers six important areas in which the education, empowerment and advocacy can improve the information, knowledge and skills of patients.

As the toolkit's users can imagine, the work of a patient advocate never ends and last 24 hours/7days per week. With the aim to cover future needs of the Share4Rare toolkit, we will update and enrich the resources of this toolkit. New suggestions are welcome from your part, and we will be glad to hear from you.

As principal investigator of the Share4Rare project my deepest gratitude to the colleagues of the UPPMD (United Parent Project Muscular Dystrophy) to lead the process to deliver this toolkit. Also, I want to thank the commitment, contribution and huge expertise of the colleagues of MPNE (Melanoma Patient Network Europe) along the co-design process.

I wish that the Share4Rare toolkit will improve the skills, knowledge and expertise to grow up new patient advocates in the rare disease world. We need you and together we can make feasible the quality of life of children and young patients with a rare condition!


Begonya Nafria

Patient Engagement in Research Coordinator

Sant Joan de Déu Research Foundation, Barcelona



Last modified
02 February 2021