A new way to see rare diseases!
Focus on public health
We believe it is necessary to reinscribe rare diseases in a public health approach, even if this is a complex task, given the centrality of “primary care” in the usual practices in the field. We are committed to the public health banner for rare diseases because, for us, the best way to deal with 6,000 diseases is to deal with problems common to all of them without prejudice to the health care provided to each one of them.
Emphasis on holistic care
About 5% of rare diseases have drug treatment. On the other hand, a Eurobarometer survey revealed that 87% of people living with rare diseases do not believe in a cure before 2030. Hence the need to assure them of an expanded health perspective: biopsychosocial well-being. It requires reconciling medical and social conditions to meet their demands.
Highlighted social needs
Today’s public debate focuses on endless discussions about high-cost drugs and their difficulty of access, not infrequently through lawsuits. In our view, this emphasis on medicines obscures other aspects that must be considered to promote the health and well-being of people living with rare diseases through public policies: gender equality; reduction of inequalities; insertion in the job market, and inclusive education, among others.
2030 Agenda and human rights
Our strategy to advocate for health equity in rare diseases is to reconcile the Sustainable Development Goals (SDGs) of the 2030 Agenda with the international human rights treaties that allude to challenges experienced by patients.