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Patient Advocacy Toolkit: Why Speak Up?

Lobbying, raising awareness and getting equipped

What is lobbying?

Lobbying is an attempt to influence policy making/legislation, to create awareness in society about a specific issue and to ask for changes in areas where improvement is needed.

Why lobby?


Patients have a unique perspective on the problems they face. Politicians and Senior Health Officials are busy and have enormous and varied roles to fulfil. This means that the detail and reality of patient experience are often lost to them. Hearing the constructive views of patients who are experiencing 'the system'  first-hand can touch emotions and influence policymakers; 'What if this was happening to them or one of their loved ones?'.

What you need to communicate and to whom

Rare cancer patients and their families need and want improvements in diagnosis and treatments. Society, health authorities and legislators need to be made aware of these urgent needs and encouraged to take action. To make sure that you have the desired impact, you need to equip yourself and your team/supporters with a list of specific needs:

Identify your needs

  • Prepare some basic data information about your rare cancer (a poster is useful as it summarises everything that you want/need in a simple format)
  • What are you aiming to achieve?
  • Prepare simple documents to bring your needs to life, so that you can send or leave them behind after a meeting
  • If possible create a website, Facebook page and Twitter account so that you have a social media presence that your supporters and those you lobby can refer to
  • Identify your audience (health authorities, local authorities, medical society, industry)
  • Clarify your key messages
  • Evaluate your resources (volunteers, budget, time required, contacts)
  • Go for it!

How to lobby?

It is vital to network and understand who else has similar needs and interests to your own.

  • Rare Cancers Europe is a hub for many rare cancer groups and can offer advice, guidance and introductions to groups that may help your cause. There may already be groups in your country that are experienced in lobbying and can help to introduce and guide you.
  • Engage with your local politician(s) - they can help raise awareness of the needs of your patient group and open access to meetings with relevant senior health decision makers.
  • Engage with Members of the European Parliament (MEP), especially those that have an interest in health issues.

Download the complete Rare Cancers Europe Patient Advocacy Toolkit

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