Patient advocates: this toolkit should be on your holiday reading list

“The Share4Rare Toolkit for Patient Advocacy is a very well-designed toolkit that helped me a lot. It gave me the much-needed organisational support and ideas, and ways to innovate my practice. Mainly, it helped me sort out what my audience was, and which solutions I could provide to them. It also helped me define my strategy, by making me think about values and my mission. I am definitely recommending the toolkit to anyone who is starting a patient organization, like me” – says Natacha Vaz Liti, president of Associação Melanoma Portugal.

The online resource is freely available on the Share4Rare website in English and in Spanish. It consists of tools and resources on getting started or sharpening patient advocacy efforts. The toolkit is divided into chapters, each accounting for a specific advocacy aspect.

Content

1. In ‘Advocacy Essentials’, the basics can be found. This contains information on what a patient advocate is, what they need to get started, and where and when they can advocate for.
2. Then there is ‘Patient Advocacy Strategy’. This chapter helps map the environment, do an analysis on strengths and weaknesses, and how to define SMART goals.
3. The chapter on ‘Communication’ provides the tools and templates on where to find a target audience, how to define messages, and how to use which type of communication channel. 
4. In ‘Research’, patient advocates can find guidance on publishing their own research results, how to access literature, and how to include the patient perspective in clinical research.
5. In the chapter ‘Education’, patient advocates can find a summary of all available rare disease advocacy programmes, and other training toolkits that are useful.
6. Next to topic-specific chapters, there is a list of ‘Templates’ and ‘Resources’.

The Share4Rare Toolkit for Patient Advocacy is created by established patient organisations, and has contributions from researchers, business developers, journalists and other relevant experts. It can be accessed on the Share4Rare website, where patient advocates can visit the chapters and resources.

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