Patient Advocacy Toolkit: How To Say It

Communication is key to creating awareness about your messages

Prepare clear information about your rare cancer and what you are aiming to achieve

  • Prepare a campaign/call to action/event/press conference (establishing goals, priorities, timelines, resources needed, potential partners, funding, outcomes)
  • Join with others to create awareness (need to establish a list of local/national/international/umbrella patient associations/healthcare professional societies dealing with rare cancers)
  • Hosting events and making sure everyone knows about them
  • Communicating with the public through media

Tips for working with media

  • Determine your target audience
  • Prepare a media list and keep it up to date
  • Send an email to contacts
  • Use free web-based services for ecampaigns e.g. MailChimp
  • Make a list of your 10 main local contacts
  • Include contacts of other stakeholders
  • Organise your list
  • If your association is new, introduce yourself with an email
  • Facts and personal stories make news
  • If a reporter has specific questions that you are not comfortable answering, direct them to speak with a healthcare professional
  • Consider formal media training

Download the complete Rare Cancers Europe Patient Advocacy Toolkit