The internet is full of Parkinson’s information. A lot of it is outdated, poorly sourced, or buried under a mountain of clinical language that requires a medical degree to decode. This page cuts through the noise — the organisations, communities and resources I personally use and trust, with a plain-English note on why each one matters.
🇬🇧 UK Organisations
Parkinson’s UK
The UK’s leading Parkinson’s charity. Excellent helpline, local support groups, and one of the most comprehensive symptom libraries available online. If you’re in the UK and newly diagnosed, this is your first stop.
Cure Parkinson’s
Focused specifically on funding research to slow, stop and reverse Parkinson’s. If you want to follow cutting-edge trial news and understand what’s coming down the pipeline scientifically, this is where to look.
🇺🇸 US Organisations
Parkinson’s Foundation
The US counterpart to Parkinson’s UK — and equally excellent. Their helpline (1-800-4PD-INFO) connects you to Parkinson’s nurses for free. Their Centres of Excellence network is how I found my Movement Disorder Specialist at Vanderbilt. If you’re in the US and uninsured or struggling to access specialist care, start here.
Michael J. Fox Foundation
The world’s largest private funder of Parkinson’s research. Their Trial Finder tool is essential if you want to participate in clinical trials — which, aside from potentially helping science, often gets you access to specialist care and medications at zero cost.
American Parkinson Disease Association (APDA)
Excellent network of local chapters, free educational programmes, and an information helpline. Strong on the caregiver support side too — worth bookmarking if you’re a partner or family member trying to navigate this.
Davis Phinney Foundation
Founded by former Olympic cyclist Davis Phinney, who was diagnosed with young-onset Parkinson’s. Their focus is on living well with Parkinson’s right now — not just waiting for a cure. Their “Every Victory Counts” manual is one of the most practical resources I’ve come across.
💬 Community & Support
r/Parkinsons (Reddit)
30,000+ members. Unfiltered, honest conversation about life with Parkinson’s from people actually living it. The clinical resources are great, but sometimes you just need to hear from someone who knows exactly what a bad “off” morning feels like. This is that place.
Know a resource that should be on this list? Drop it in the comments below and I’ll check it out.
