On Friday 17th April we sponsored the Findacure workshop on the topic of communications and PR for small patient groups. The AKU Society decided to sponsor this event in order to share what we have learnt about communications whilst undertaking our Reaching Communities project, funded by the Big Lottery Fund (BLF). Today we share with you how the event went.
Findacure’s training workshops for patient groups are well established in the rare disease community, so teaming up with them meant the day was a fantastic and varied training workshop. Flóra Raffai, Head of Development at Findacure, began the day by launching Findacure’s Online Portal. This is a fantastic free resource to support the training workshops, with online training on a range of topics. Sign up for free here.

Our Online Communications Officer, Sorsha Roberts, was the first speaker of the day. Her talk focused on the importance of social media for rare disease patient groups. An IMS Institute survey revealed 42% of respondents have used social media to find healthcare information. Sorsha pointed out the need to find information online is even greater for rare disease patients, as traditional forms of health information often fail them. This leaves them with little knowledge, and often no diagnosis.


The same study revealed Facebook as the 4th most popular source of health information in the UK. Often patients are seeking not only information, but also support, which is why they turn to social media. This is especially true of rare disease patients, who can often feel isolated by their disease.

The goals of our BLF Reaching Communities Project are to reduce isolation among our patients, to raise awareness about AKU, and to improve the standard of care for patients as a result. Sorsha spoke about how we use Twitter and Facebook to connect with patients and the wider rare disease community, campaign for rare disease awareness, and share information and resources.

Sorsha also spoke about the benefits of setting up your own online communities. We have two communities which are free for patients to join. The first of these is on PatientsLikeMe, a great platform which not only provides forums for patients to speak to one another, but also allows patients to keep their own personal health records, which then get displayed in a helpful chart for them to review.


Our second community is on RareConnect, which is a platform run by Eurordis and NORD. It is completely free for patient groups to develop their own community, and the free human translation option allows patients to speak to eachother despite language differences.

It is also crucial to build connections with professionals and doctors in order to raise awareness and improve the standard of care for patients. Sorsha told the group about the online learning module we have developed with the Royal College of General Practitioners (RCGP) to teach healthcare professionals about AKU, and improve rates of diagnosis. Although it is aimed at GP’s, anyone can access it for free from our website.

Next to speak was Stefania Rucci from Say Communications, who spoke on working with the media. She emphasised the importance of creating a story the media will really be interested in, and knowing which media to target.


Being prepared at all times is important; always be ready to launch a story if the time is right, have experts or patients at hand to speak to the media, and have a bank of case studies at the ready. Media is a very important awareness tool, but you don’t always have to go big- start with your local media, and build relationships with the press.


After the first two talks we were given the opportunity to discuss what we had learnt so far. It was great to be able to meet other groups and share our experiences of communications and the media. A coffee break with delicious cookies followed, and we were ready for the next talk.


Anastasios Koutsos from Ogilvy Healthworld spoke to us next on communicating the rare. His talk complimented Stefiana’s talk brilliantly, going in to the detail of how to create a good press release. His key tips were to focus on getting the detail in to the title and first paragraph, whilst keeping the whole piece very simple. A compelling story will have emotion, characters, and a structured beginning, middle and end. He also mentioned the importance of creating a brand, or ‘personality’ for your organisation itself.


The final talk of the day was from Lara Chappell, who is the head of the communications team at Eurordis, and is in charge of the promotion of rare disease day. She spoke on how to create awareness days and use existing international campaigns to benefit patient groups. She highlighted the great success of rare disease day as an international campaign, and explained how this success is down to the involvement and collaboration of patients and patient groups.


Lara pointed out you don’t always need to create your own campaign to raise awareness- existing campaigns such as rare disease day are incredibly powerful. Awareness days provide a focus for the media, and a reason for them to report on your story, so use them to promote your cause.


Overall the day was a real success, and we enjoyed sharing our knowledge, and learning from others. A big thanks to Findacure for working with us to create such a fantastic day, and thanks again to the BLF for funding our project.