The challenge we were solving

Amyotrophic Lateral Sclerosis (ALS) is a fast-progressing neurodegenerative disease that severely affects mobility, speech, swallowing, breathing, and overall independence. In Portugal, many ALS patients face delays in diagnosis and treatment, fragmented care, and unequal access to support – placing a significant burden on both patients and caregivers.

The lack of a coordinated care pathway contributes to late interventions, low health outcomes, and deeper social and regional inequalities.

Project partners

Scientific collaborators: Prof. Dr. Mamede de Carvalho and Dr. Rui Mesquita.

Project goals

  1. Characterize the healthcare journey of ALS patients in Portugal.
  2. Map an integrated, patient-centered care pathway that includes both health and social care services.
  3. Understand the clinical, social and economic resources needed to serve ALS patients and families.
  4. Identify key barriers to early diagnosis, treatment, and coordinated support.

Our role

  • Led the research effort to analyze and document ALS patient pathways across the health and social care systems.
  • Worked with patients, families, and professionals to identify needed resources and gaps in care coordination.
  • Supported the design of a better-integrated care model, aligned with patient-centered healthcare principles.

Lead researcher at VOH

Ana Rita Londral, PhD

Executive Director

Project outcomes and impact

  • Delivered a detailed characterization of ALS care pathways in Portugal.
  • Highlighted major barriers to early diagnosis and coordinated support.
  • Identified the social and economic burden carried by patients, caregivers, and families.
  • Mapped the core components of a patient-focused pathway.