ADELIS is a French patient advocacy foundation dedicated to supporting research and patients affected by Progressive Supranuclear Palsy (PSP) and related disorders, including Corticobasal Degeneration (CBD) and Multiple System Atrophy (MSA). Founded in France, ADELIS serves as the primary organization for French-speaking patients and researchers working on atypical parkinsonism disorders.
The ADELIS Foundation is committed to:
- Funding innovative research on PSP and atypical parkinsonism
- Providing comprehensive support for patients and their families
- Raising awareness about PSP across France and French-speaking countries
- Promoting clinical research and clinical trials
- Facilitating collaboration between researchers, clinicians, and patient advocates
ADELIS provides competitive research grants for French researchers conducting studies on:
- Biomarker discovery and validation
- Disease mechanisms in tauopathies
- Clinical trial design for PSP
- Patient outcomes and quality of life improvements
- Information helpline for patients and caregivers
- Educational materials on living with PSP
- Regional support groups throughout France
- Caregiver training programs
- Annual medical conferences featuring PSP experts
- Continuing medical education (CME) programs
- Training workshops for neurologists and geriatricians
- Collaboration with university hospitals for specialized training
ADELIS organizes an annual patient meeting that brings together:
- Patients and family members
- Leading PSP researchers
- Healthcare professionals
- Pharmaceutical industry representatives
These meetings feature the latest research presentations, caregiver workshops, and networking opportunities for the PSP community.
ADELIS funds its activities through:
- Individual donations and membership fees
- Corporate sponsorships from pharmaceutical companies
- Fundraising events (marathons, gala dinners)
- Government health grants
- Established the French PSP patient registry
- Funded over 20 research projects since inception
- Created standardized French-language PSP diagnostic criteria
- Established clinical trial ready centers in major French cities
- Launched the ADELIS PSP Biobank for research samples
ADELIS works closely with:
- PSP Europe - European PSP network
- CurePSP - US-based PSP foundation
- Tau Consortium - International tauopathy research network