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Resources & Community

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Resources & Community

A curated directory of the most authoritative and helpful organizations, databases, clinical trial registries, patient communities, and educational resources for Parkinson’s disease.

Major Patient Organizations

  • Parkinson’s Foundation (parkinson.org) — Helpline, Centers of Excellence, research funding, educational materials, online community
  • Michael J. Fox Foundation (michaeljfox.org) — World’s largest private funder of PD research; PPMI study; Fox Trial Finder for clinical trials
  • American Parkinson Disease Association (apdaparkinson.org) — National programs, local chapters, caregiver resources, research funding
  • European Parkinson’s Disease Association (epda.eu.com) — European patient network, country-specific resources, research advocacy
  • Parkinson’s UK (parkinsons.org.uk) — UK’s largest PD charity; research funding, specialist nurses, helpline
  • Davis Phinney Foundation (davisphinneyfoundation.org) — “Every Victory Counts” manual (free); Victory Summit events; living well focus
  • World Parkinson Coalition (worldpdcoalition.org) — International advocacy and World Parkinson Congress

Clinical Trial Resources

  • ClinicalTrials.gov — US National Library of Medicine registry of all registered clinical trials worldwide; search for PD trials by location, phase, and eligibility
  • Fox Trial Finder (foxtrialfinder.michaeljfox.org) — Patient-friendly PD trial matching service
  • EU Clinical Trials Register (clinicaltrialsregister.eu) — European clinical trial registry
  • PPMI (Parkinson’s Progression Markers Initiative) — Open-access longitudinal biomarker study; data available to researchers at ppmi-info.org

Scientific Journals & Databases

  • Movement Disorders — Official journal of the Movement Disorder Society; highest-impact PD-specific journal
  • npj Parkinson’s Disease — Open-access, Nature-portfolio journal
  • Parkinsonism & Related Disorders — Clinical focus
  • Journal of Parkinson’s Disease — Open-access, broad scope
  • PubMed (pubmed.ncbi.nlm.nih.gov) — Free access to biomedical literature abstracts
  • Europe PMC (europepmc.org) — Full-text access for many open-access publications

Exercise & Wellness Programs

  • Rock Steady Boxing (rocksteadyboxing.org) — 900+ locations worldwide; non-contact boxing for PD
  • Dance for PD (danceforpd.org) — Mark Morris Dance Group program; 25+ countries
  • LSVT Global (lsvtglobal.com) — LSVT LOUD (speech) and LSVT BIG (movement) programs; certified therapist directory
  • Parkinson’s Foundation Moving Day — Annual fundraising walk events; community building
  • PD Warrior (pdwarrior.com) — Online and in-person high-intensity exercise programs specifically for PD

Online Communities & Support

  • Parkinson’s Foundation Online Community
  • PatientsLikeMe (Parkinson’s section)
  • Reddit: r/Parkinson — Active patient and caregiver community
  • Parkinson’s Disease Warriors (Facebook group)
  • High Dose Thiamine for PD (Facebook group) — Patient-led discussion of thiamine protocol
  • DBS Surgery and PD (Facebook group) — Pre/post-DBS patient community

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