Share4Rare toolkit for patient advocacy

• No matter how much you know about the disease you are advocating for, approach your audience as if they haven’t heard of it and avoid jargon.
• Limit written correspondence to a maximum of one page - people don’t always have time to read long emails and letters.
• Put your most important points at the top.
• Create an information kit which covers the basics of what you do, along with your contact details.

Presenting

• If presenting to an audience, speak clearly and in short sentences.
• Look at the audience and engage them.
• If using slides in a presentation, avoid cramming too much text onto one slide - it will be unreadable from the back of the room.
• Keep the layout simple and don’t use too many different fonts - your message should take centre stage.

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• Go into the presentation with more information than you’ll need so that you have material ready to answer questions.
• Practice in front of a mirror or present to friends who can time you and give you tips.
• Summarise your key message at the end of your speech.
• An image speaks more than a thousand words: visuals help you convey the message that you want to spread, and makes your presentation more appealing.

Meetings

• Networking is a crucial and indispensable part of advocacy. Learn to love it.
• If you are someone who finds approaching people you’ve never met and striking up a conversation difficult, a good tip is to pretend that the meeting you are at is your party and that all the attendees are your guests. Imagine that you are simply checking up on whether your guests are having a good time at “your party” and this will make it a little easier to go for the initial approach. Keep your focus concise - if you have someone’s attention for five minutes, focus on one issue rather than the six problems your patient community has.
• End your meeting by exchanging contacts and requesting follow-ups.
• If possible: connect on Facebook or LinkedIn.

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Following up

• Even the most eager contact can sometimes forget to respond. Send a gentle reminder after a few days.
• If you have a telephone contact, following up by phone is best and is more likely to get you the result you want.
• Remind the contact you are following up with about where and when you met and what you represent.
• Be wary of being persistent to the point of being a nuisance. If someone has made it clear that they’re not interested, pestering them will not change their mind.

Find here an additional tool and template 1 and template 2 on how to write a letter to an editor and a tool and template on how to write a letter to a politician or bureaucrat.