Working with the media

Engaging with the media can be a powerful tool to help raise awareness of the 10 year anniversary of hae day :-) and HAE. This guide can help you if you decide you want to try and raise awareness of hae day :-) and/or an event you are planning, through the media.

Preparing your press kit

Before contacting any journalists, it is important to consider the story elements you have to offer. Different media will be interested in different things, depending on their audience.

As there are many awareness days, it may be quite challenging to interest the media in covering one focusing on HAE. Making it as easy as you can for journalists to see the story, the better your chance of interesting them in hae day :-) and HAE.

We’d love to see any media coverage you generate for hae day :-) 2021. You can keep us updated via

Key elements of your press kit are:

Press release

Below you will find a template for download. This can be used with your media and any other contacts you want to inform of the hae day :-) and/or your event.

In the template there is space for you to incorporate details about your plans to celebrate the day. It will be important to incorporate relevant local patient and physician quotes. We have included some points for you to consider.

>> Download press release template

HAE Fact Sheet

A fact sheet can be used to support the content of a press release.

It provides more detailed background information to add to the journalist’s understanding of the disease area and situation. It can be sent out with a press release or as additional material later on.

The fact sheet provided to you contains up to date global information on HAE. However, it will be more useful to your journalists if it has content that is relevant to your country. You should include national or even regional statistics if you can.

This template is available for you to adapt and use but don’t forget to check and add any new references.

>> Download HAE fact sheet

Talking points

Talking points are key to prepare and have as support for you and your team in advance of contacting any member of the media, third party or potential partner organization.

Talking points:

  • outline the key points about hae day :-) and any activity you are planning. This means you can be sure to communicate what matters, at every opportunity.
  • are what makes your story of interest to a journalist and so can be prepared from the most important information in your press release; who, what, why, where, when, and how. This is usually the headline and first paragraph with some background such as what HAE is, national or even regional information.
  • should be short and simple, so consider writing these in bullet point form.

Spokespeople/case studies

Often with health stories, journalists will ask to speak to a spokesperson to get a first hand account of what it is like to live with or treat a particular condition. This is even more valuable in the case of a rare disease when not many people may have heard of it.

A spokesperson could be the head of the HAE Organization, a physician or nurse who sees HAE patients, or a person with HAE willing to share their story with the media (often known as a case study).

If you have a spokesperson or case study you want to put forward, its important that they are aware that nothing that is said to a journalist is ever off the record, and for a written article, it is very unlikely that you will be able to see the article before it goes into print.

To help prepare your spokesperson or case study, here’s a list of tips that might help before, during and after the interview.

>> Download media guide – Spokesperson and case study tips


The journalist might ask for photos or images to support the story.

You should consider this if you plan on sending images/photos to support the story:

  • The photos will need to be a high resolution (most camera phones are great these days).
  • Make sure that you have permission from individuals in images, that they are happy for the photo to be sent to a journalist, before you send them.
  • Be aware that if you have shared the photo on social media, a publication may take and use that without asking – as this is a publicly available image.

If you do not have any images, it might be a good idea to visit the HAE Image Repository of the US Hereditary Angioedema Association at

Contacting the media

So, you have a story that’s newsworthy and you want to contact the media, and may wonder:

  • How do you do this?
  • Which media types could you go to?
  • How do you find their contact details.

This download has more information!

>> Download media guide – Contacting the media

More hae day :-) awareness tools

This toolbox also contains two more sections with good advice and templates with awareness tools

Working with the community

Working with social media