Patient advocacy organizations play a critical role in neurodegenerative disease research by funding research, providing patient support, raising awareness, and accelerating therapy development.
Mission: To eliminate Alzheimer's disease through the advancement of research
Activities:
- Research funding ($300M+ annually)
- Patient support and education
- Advocacy and policy
- Clinical trial matching
Website: alz.org
Mission: To find a cure for Parkinson's disease
Activities:
- Research funding ($100M+ annually)
- Patient enrollment in trials
- biomarker development
- Therapeutic pipeline tracking
Website: michaeljfox.org
¶ Lewy Body Dementia Association
Mission: To raise awareness and advance research on Lewy body dementia
Activities:
- Patient and caregiver support
- Healthcare provider education
- Research funding
- Awareness campaigns
Website: lbda.org
Mission: To improve the lives of people with FTD
Activities:
- Research funding
- Patient support programs
- Education for healthcare professionals
- Advocacy
Website: theaftd.org
Mission: To cure prime causes of neurodegenerative death
Activities:
- Research funding for PSP, CBD, MSA
- Patient support
- Healthcare provider education
- Awareness campaigns
Website: curepsp.org
Mission: To lead the fight to treat and cure ALS
Activities:
- Research funding
- Patient care
- Advocacy
- Clinical trial support
Website: als.org
Patient advocacy organizations provide critical research funding:
- Fill gaps in government funding
- Support high-risk/high-reward research
- Enable clinical trial infrastructure
- Connect patients with research opportunities
- Provide natural history data
- Support clinical trial design
- Accelerate recruitment