Share4Rare toolkit for patient advocacy

Start with your central focus and why you want to advocate. This will give you an idea of what it is you need to do. Follow this chapter to create your central message, aims and how to reach them.

Set out your concrete points, areas which you are willing to be flexible on and areas which you consider red lines (such as accepting funding from certain sources or working in collaboration with particular drug companies).

Research your agenda and gather evidence

Focus on what your message will be and take a look around to see who else is doing something similar to what you are. While it’s great to use resources already available, it is also a very good idea to take a little time out to look deeper into research, especially facts and figures. If another advocacy body has presented some data, check the source and go to the original document to see it for yourself.

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As mentioned in section Risks in advocacy, it is quite easy for bias to creep into available data since each body putting it out is likely to have its own agenda.

If all your work is professional and backup your advocacy with evidence, this applies also for your policy and lobbying work. (ex. Eurordis  Position Papers)

Understand the agenda from national to global level

As an advocate, the cause is no doubt close to your own heart. But can it be developed into a message to reach a wider audience? Assess the level of coverage and interest for your cause, locally, nationally and internationally. This will give you a feel of how to create your advocacy framework, what your message should be and how it can best be targeted.

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Working in partnership

As you do your research, you may find in this process that there are umbrella advocacy organisations that you fall under to strengthen your efforts and give you more leverage. Another option is to join forces with another advocate or advocacy groups and see if your combined efforts can yield better results.

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It’s important to do your research before entering into any partnership. Different bodies and agencies have different agendas and it’s possible that they have funding from various sources. Ask questions and do your research to establish if your core interests and beliefs are aligned.

Working with all stakeholders is key for the Rare Disease community. Still especially when you interact with the pharmaceutical it is important to follow the same rules in order to perform your work effective and properly. To do the best way is to follow EURORDIS Code of Practice between Patient Organizations and the Healthcare Industry. 

Conflict of interest/Declaration of interest

Conflicts of interest can crop up from time to time. An example of a conflict of interest could be an advocate who is invited to speak at an event and is paid for doing so, with the funding for this payment coming from a source that their advocacy reputation could be damaged from (e.g. a cancer research advocate indirectly being paid by a certain pharmaceutical company.

Areas where a conflict of interest can crop up between two parties include:

• Employment
• Consultancy activities
• Funding sources
• Collaborations with other organisations
• Gifts given or accepted
• Hospitality given or received
• In-kind work, activities or consultation
• Close family members and their involvement in areas that could be a conflict of interest

In this context, verbal agreements are not very useful. To keep your strategies and visions clear for all parties, it’s best to have conflicts of interest form to fill in and sign so that there is a concrete record of which party is bringing what to the agreement and what they can and cannot do.

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By offering a Declaration of Interest (DoI) form for all parties you work with, you will ensure clarity and transparency and protect your reputation as an advocate.

See section Advocacy Tool Templates for a sample Declaration of Interest.

The European Medicines Agency follows strict guidelines to manage conflicts of interest of all involved parties. Their guide can be found in section Resources and will give you a thorough idea of how to structure your own conflicts of interest policy.

Timeframes/Timeline

No matter how big or small your goal is, it needs to be put into context against a timeframe. Ask yourself what you hope to achieve with your advocacy in a month, year or five years.

Mapping out your timeframe in a visual way will give you an idea of where you are and where you need to be, so consider creating a physical timeline and keep it somewhere where it is visible for you to sustain your momentum, continue working toward your goals and stay organised.

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See section Establishing your goals and objectives (SMART) for establishing SMART goals, which includes timeliness. Make sure your timelines are ambitious but also realistic - leave enough time for adverse scenarios so that you can change direction and still remain on track.

See section Advocacy Resources for an advocacy grant timeline sample which tracks funding activities. This same principle can be applied to other areas of your advocacy as well, such as event planning, marking an annual awareness day, advocacy outreach and more.