Rare diseases: a great challenge for bioethics

11 July

 This year, the Foundation’s annual Josep Egozcue Conference will focus on Rare Diseases, a complex topic that entails a number of ethical considerations.

Currently, approximately 300 million people worldwide are affected by some type of rare disease, including 36 million in Europe. Although many of these disorders only affect only a few individuals, some can be progressive and degenerative. When thinking about rare diseases it is useful to think of them in terms of a triad: patient, family members, and healthcare professionals.

Relevant aspects such as early diagnosis, genetic counselling, research and the expense associated with treatments all raise a number of ethical questions. It is up to bioethics to examine such issues, which is why we welcome to the series expert voices from various fields, as well as perspectives from patients and their families.

Participants:

• Iolanda Arbiol, director, Dr. Torrent-Farnell Foundation
• Carmen Ayuso, scientific director, Jiménez Díaz Foundation
• Ignacio Blanco, clinical director, Laboratori Clínic de la Metropolitana Nord
• Victòria Camps, president, Víctor Grífols i Lucas Foundation
• Núria Codern, member of the Research Group on Diagnostics and Complex Interventions in Health from Employment and Care
• Teresa Pàmpols, member of the Ethics Committee of the Spanish Association of Human Genetics
• Núria Tarrats, researcher, DEBRA Butterfly Skin Organization
• Núria Terribas, director, Víctor Grífols i Lucas Foundation
   

Programme

Registration

Thursday, 11 July
Auditorium, Ateneo Barcelonès
C/ de la Canuda, 6 – Barcelona

In partnership with: