The Parkinson’s Registry. By and for pwPD. Global. Digital. Simple.

Every journey counts. Every experience counts. We share our knowledge to improve all our lives today, prevent new cases tomorrow, and eradicate Parkinson’s disease completely soon.

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What we do

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A global initiative – driven by PwPD

We are a patient-led, independent, non-profit organisation based in Berlin. Since 2024, we have been creating a global, digital Parkinson’s registry to structure and collate the extensive experiences of those affected and make them available as open data for research – for a better quality of life today and prevention tomorrow.

It is estimated that more than 10 million people worldwide live with Parkinson’s disease; 10 million families suffer from its increasing effects; symptomatic treatments provide temporary relief, but there is still no disease-modifying therapy available.

Our mission: Global research can better understand the fundamentals, localise the weak points of the disease and eradicate Parkinson’s if significantly more health information (including historical and biographical data prior to diagnosis) is collected worldwide.

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Why Parkinson’s disease is important

Parkinson’s disease is becoming increasingly common – and is occurring at an earlier age.

  • Millions of people worldwide struggle with this disease.
  • 200% more cases in the last 25 years.
  • More and more young people are being diagnosed.

Understanding the root cause not only helps Parkinson’s patients, but protects us all.

And if we act now, we can prevent this disease from destroying more dreams for the future.

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Why a patient-led registry will change a lot

Traditional research focuses heavily on symptoms. We also focus on causes. Why? We are convinced that the key lies within us and that we should combine our knowledge and experiences – before, during and after diagnosis – in order to identify patterns.

By making this extensive, long-standing and valuable knowledge – from both people with Parkinson’s disease and their families – available to the best researchers globally, we hope to achieve breakthroughs in causal Parkinson’s therapy that clinical trials alone have not yet been able to achieve.

More about the Register

How you can help

No lab coat required. Just your heart – and a few minutes of your time.

  • Join our waiting list – Whether you have Parkinson’s yourself or support someone with Parkinson’s, your knowledge could be the key.
  • Donations – We work on a 100 per cent voluntary basis. Every euro helps us to realise the register and make it known globally.
  • Spread the word – Follow us on social media, share our mission and encourage others to join us.
  • Collaborate – doctors, hospitals, journalists – let’s work together.
  • Volunteering – Contribute your time and skills to our growing team.
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What your donation makes possible

Even small monthly contributions create real momentum.

This is what your donation can achieve:

  • $ 10 – Covers our monthly software costs for one employee
  • $ 25 – Enough to connect with an additional 100 people with Parkinson’s via social media
  • $ 50 – Helps share insights with researchers around the world
  • $ 100+ € – Enables AI tools that recognise patterns leading to breakthroughs

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Let’s put an end to this together!

Every bit of support. Every personal story.

Every action brings us closer to the day when we say:

Parkinson’s no longer determines my future.

Be part of this breakthrough

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