Share4Rare toolkit for patient advocacy

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Expand - Finding your tribe

Even if you are planning to advocate alone or together with a small team, finding like-minded people will help your cause. Other advocates or members of the patient community can act as a sounding board for your ideas, and be an important source of morale when the going gets tough.

Find the national representative group of the condition you are advocating for and join their events in order to connect and network. If there is no such representative organisation, consider setting one up yourself. It can be as informal as a Facebook group and will build over time to provide an important resource for all members.

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Advocacy can at times be lonely work. Having a few friendly ears to share your thoughts with can give you new ideas you might not have considered and release built-up stress.

There are many online forums and platforms where you can find like-minded people to share thoughts, ideas and experiences. A few tips on finding your tribe and finding the benefits of connecting to like-minded people:

  • Connect with people with the same intentions as you. That can be other advocates, entrepreneurs, or fellow people that you feel empowered to.
  • Discover what your passion or interest is. What makes you happy, and fills you with pride?
  • Know your worth. You need to feel confident with yourself, not constantly mirroring yourself to people you surround yourself with.
  • No judgement. By postponing your judgement, you create space for exploration and self-reflection that can lead to unexpected friendships.
  • Be proactive. You can wait for people to approach you, but you can also be brave and connect with people. The worst they can do is say no!
  • Connect. Dare to share your vulnerable side and genuinely and regularly connect on a deeper level with a select group.

Partnerships and coalitions

Partnerships and coalitions are a vital tool which can help you progress your work and spread your message faster. They can also help lend credibility to smaller organisations by having the backing of a larger, more well-known on. They can also widen your network to reach communities you might be trying to get access to.

Such relationships can take several forms:

  • Formal or informal
  • Long or short term
  • Single or multi-stakeholder
  • With financial support or not

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Partnerships can also involve the sharing of knowledge and information, joint planning and organising of events or conferences, and consultation. Keep in mind that the partnerships you form should be considered and strategic - it is not a wise move to form an alliance with everyone who requests it. Larger organisations often update their work and have smaller projects running. Keep an eye out for sub-projects which are relevant to what you do which you could partner yourself with.


Choosing partners

Creating a partnership takes time and research to pick the right alignment. It also takes hard work and trust in order to ensure that you’ll work harmoniously together and protect each other’s interests.

Do your due diligence when choosing a partner and map out what you are looking for. Consider common goals and objectives as well as your differences in approach. Write down why you think they could be a useful alliance, and what you can offer in return. Don’t discount potential partners if they are not a match now - they could be in the future. 

Last modified
28 January 2021
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