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This Parky Charter is a vital document that outlines the rights and expectations of individuals living with Young Onset Parkinson's Disease (YOPD). It serves as a guiding light for our community, empowering us to come together, inspire change, and advocate for a better future.

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Ensuring Your Rights

The five rights listed below extend to all people living with YOPD worldwide. These rights will ensure that people living with YOPD have the power to make informed decisions about their own care and needs. All people living with YOPD are entitled to these basic rights so that they can achieve optimal quality of life and dignity in living.

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The Parky Charter

Your five rights

1.

People with YOPD have the right to access quality care and treatments

This includes:

  • Early access to a physician who is informed about YOPD
  • An accurate and early diagnosis, delivered sensitively
  • Timely and appropriate access to information, at all stages of their condition

2.

People with YOPD have the right to access quality care and treatments

This includes:

  • Access to support and care services managed by a professional who has experience with YOPD
  • Educated advice about personal care and equipment, clinical interventions, treatments and therapies

3.

People with YOPD have the right to be treated as individuals and with dignity and respect

This includes:

  • Being offered a personal care plan to specify what care and support they need
  • Being offered support to help them make informed medical choices to meet their personal needs
  • Opportunities to be involved in research including genome sequencing

4.

People with YOPD have the right to maximise their quality of life

This includes:

  • Timely and appropriate access to equipment, home/work adaptations, wheelchairs, and suitable housing
  • Timely and appropriate access to disability benefits

5.

Carers of people with YOPD have the right to be valued, respected, listened to and well supported

This includes:

  • Access to support and counselling, such as respite care and psychological support
  • Having their needs assessed as carers and as individuals
  • Access to appropriate benefits and entitlements
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