Beyond the disease itself: A cross-cutting educational initiative for patients and families with rare diseases

Eulàlia Rovira-Moreno, Anna Abuli, Marta Codina-Sola, Irene Valenzuela, Clara Serra-Juhe, Ivon Cuscó, Mar Borregán, Anna Cueto-González, Teresa Vendrell, Fermina López-Grondona, Carme Brun-Gasca, Eduardo Brignani, Laia Martínez-Ribot, Regla Garci-Espejo, Jordi Cruz, Elena García-Arumí, Eduardo F. Tizzano*

*Corresponding author for this work

Research output: Contribution to journalArticleResearchpeer-review

Abstract

Rare diseases (RDs) as a whole affect a huge number of individuals although each specific condition comprises a low number of individuals. As a consequence, funds allocated to expand research to all conditions are often limited. Several initiatives have emerged to invest more resources for research in RDs, but patients express unmet needs regarding educational initiatives, awareness support, and psychosocial resources. We developed an educational training program in the format of weekly sessions covering basic medical scientific knowledge and psychosocial aspects of RDs. The aim of this initiative was to assess its overall impact regarding knowledge, psychological issues, and participant satisfaction. Items were evaluated through surveys before and after the sessions. Here, we report the experience and impact of two editions of this initiative with a total of 37 participants. Our results show improvements in knowledge and better management of the psychological impact. Moreover, participants were able to exchange experiences and concerns, most of which were shared even though the RDs were different. Overall, the program was evaluated by the participants as a highly beneficial experience and all of them were interested in attending advanced editions.

Original languageAmerican English
JournalJournal of Genetic Counseling
DOIs
Publication statusAccepted in press - 2020

Keywords

  • communication
  • education
  • lived experience
  • multidisciplinary
  • psychosocial
  • rare diseases

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