05/06/2026
“The real challenge today is not only to innovate, but to ensure that innovation translates into equitable access for all—regardless of where you are born or live.”
This was one of the key messages shared by Alba Parejo, RDI Strategic Engagement Officer, during Únicas Talks 2026, organised by Barcelona Children’s Hospital Sant Joan de Déu and the Fundación ”la Caixa”. This year’s edition focused on recent advances in diagnosis, care models, and therapeutic innovation, while reinforcing the importance of collaboration to address ongoing challenges in rare diseases. The meeting brought together a diverse group of stakeholders—including clinicians, researchers, policymakers, industry representatives, and patient organisations—highlighting the collective effort needed to improve outcomes for people living with rare diseases.
As part of a panel focused on equity in access, Alba contributed both a global and personal perspective as a PLWRD.
🌐 Access gaps remain: despite scientific progress, access to diagnosis and treatment still varies widely depending on geography, resources, and socioeconomic context. Rare diseases, by definition, require international collaboration.
🏥 Systems remain fragmented: limited integration of rare diseases into national health systems means access is not guaranteed. Even where services exist, they are often fragmented, poorly coordinated, and difficult to navigate—placing an additional burden on PLWRD and families.
🗣️ Patients must be partners: people living with a rare disease should not only be recipients of care, but active contributors in shaping research priorities, health policies, and the solutions that affect their lives.
Because in rare diseases, true progress will only be measured when every person—regardless of where they live—has the opportunity to access diagnosis, care, and support, and to be part of the decisions that shape their lives.
RDI
