Asociación Española de PSP (Spanish PSP Association), commonly referred to as PSP Spain, is the national patient advocacy organization for progressive supranuclear palsy in Spain. The organization provides support to Spanish patients and families, promotes research into PSP, and raises awareness of the condition among healthcare professionals and the public.
The Spanish PSP Association was founded to serve the growing number of PSP patients identified in Spain, where movement disorder specialists have built substantial expertise in atypical parkinsonian syndromes. The organization operates as part of the broader European PSP network and collaborates closely with CurePSP and other national PSP organizations.
¶ Mission and Activities
PSP Spain provides comprehensive support services:
- National helpline: Telephone support in Spanish for patients and families
- Information materials: Printed and digital resources about PSP management and care
- Regional support groups: Connecting patients across Spain's autonomous communities
- Caregiver support programs: Specialized resources for those caring for PSP patients
The organization supports Spanish PSP research:
- Research grants: Funding for Spanish researchers studying PSP
- International collaboration: Facilitating partnerships between Spanish and international research groups
- Clinical trial promotion: Supporting recruitment for trials in Spain
- Training awards: Supporting Spanish researchers to train in leading international centers
PSP Spain maintains relationships with major Spanish research centers:
- Hospital Clínico San Carlos, Madrid — Neurology and neurodegenerative disease research
- Hospital Universitario Virgen del Rocío, Seville — Clinical care and research in tauopathies
- Instituto de Salud Carlos III — Government research funding
PSP Spain is part of the European PSP advocacy network, collaborating with:
¶ Leadership and Governance
PSP Spain is governed by a board of directors with patient, caregiver, and medical representation:
- President: Elena Martínez Sánchez (patient advocate and founding member)
- Medical Advisory Board: Includes neurologists from all major Spanish movement disorder centers
- Scientific Committee: Coordinates with Spanish researchers and the International PSP Society
The organization operates through:
- National coordination: Madrid headquarters, managing regional operations
- Regional chapters: Catalonia, Andalusia, Valencia, Basque Country, Galicia, and Madrid
- Online support: Digital communities and telemedicine support programs
Spain has become a significant site for international PSP trials:
- Hospital Clínico San Carlos, Madrid — Led by Dr. José L. López-Sendón, Phase 1/2 trial site for tau aggregation inhibitors
- Hospital Universitario Virgen del Rocío, Seville — Alberto Martínez-Ramón group, neuroimaging and biomarker research
- Hospital de la Santa Creu i Sant Pau, Barcelona — Movement disorder center with active PSP cohort
- Centro de Investigación Médica Aplicada (CIMA), Pamplona — Basic science and translational research
- IDIBAPS, Barcelona — Río Hortega fellow program in neurodegeneration
| Trial |
Phase |
Spanish Sites |
Focus |
| Tau Imaging Studies |
Phase 2 |
Madrid, Barcelona, Seville |
PET tracer validation |
| Biogen BBSII |
Phase 2 |
Barcelona, Madrid |
Anti-tau antibody |
| Small molecule trials |
Phase 1 |
Pamplona, Madrid |
Neuroprotection |
- Alberto Martínez-Ramón (Virgen del Rocío, Seville) — MRI biomarkers, automated progression modeling
- Pablo Mir (Hospital 12 de Octubre, Madrid) — Clinical phenotype, gait analysis in PSP
- Juan García de la Torre (Hospital Clínico, Barcelona) — Genetic factors in Spanish PSP population
¶ Landmark Studies
| Study |
Impact |
| Spanish PSP prevalence survey |
First systematic prevalence estimate for Spain (2017) |
| PROPS study |
Prospective longitudinal cohort of Spanish PSP patients |
| Genetic screening |
MAPT and C9orf72 analysis in 300+ Spanish patients |
Spain's national health system (SNS — Sistema Nacional de Salud) provides:
- Specialized units: 8 movement disorder units with PSP expertise across Spain
- Long-term care: Integrated social-health services for progressive neurological conditions
- Medication access: Public reimbursement for symptomatic therapies (levodopa, amantadine)
- Catalonia: Highest concentration of PSP research centers (4 units)
- Andalusia: Strong patient registry and clinical trial infrastructure
- Basque Country: Excellent neuroimaging capacity (biobizkaia)
PSP Spain provides:
- Support hotline: Telephone and video consultation in Spanish and Catalan
- Caregiver education: Workshops on dysphagia management, fall prevention, communication strategies
- Equipment loans: Wheelchairs, communication devices, and adaptive equipment
- Family retreats: Annual gatherings bringing together patients and families
- Disability recognition: Guidance on applying for disability benefits ( Grado de Discapacidad)
- Home care subsidies: Access to Spanish dependency law (Ley de Dependencia) benefits
- Employment support: Advice for working patients and caregivers on workplace accommodations
¶ Advocacy and Awareness
PSP Spain participates in Día Mundial de las Enfermedades Raras (Rare Disease Day, Feb 28):
- Events in Madrid, Barcelona, and Seville
- Collaboration with FEDER (Spanish Federation of Rare Diseases)
- Media outreach through national television and press
¶ European and International Engagement
- CurePSP Europe: Active participation in European advocacy networks
- European Reference Networks (ERN): Spanish centers part of ERN-RND (rare neurological diseases)
- International PSP Congress: Regular Spanish delegation presenting research findings
- Asociación Española de PSP
- CurePSP Europe
- FEDER — Spanish Rare Disease Federation
- ERN-RND European Reference Network