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Communications and PR for small patient groups workshop

Our second workshop of 2015 focused on communications and PR for small patient groups.

Getting communications right can be really important when you’re a small patient group, but with limited time and resources, it can also be really hard. Our sixth training workshop saw 40 delegates from 29 patient groups meet at the Royal College of Nursing in London get tips from our expert speakers. Flóra Raffai, Head of Development at Findacure, started off the day with a short introduction of the AKU Society’s sponsorship of the workshop, as part of their BLF Reaching Communities grant. Flóra also announced the launch of our new project: an online portal for rare disease patient groups. This free resource contains guides and forums for patient groups around key issues, such as how to identify patients, how to work with researchers, and how to set up a patient group.

Sorsha Roberts - AKU Society

The first speaker of the day, Sorsha Roberts from the AKU Society, then presented on the importance of social media and online communications for patient groups. Sorsha explained how using effective online communications allowed the AKU Society to move from only knowing 4 patients in the UK to now having identified over 1000 worldwide. She talked through several different channels for online engagement, including Facebook, Twitter, and online patient forum PatientsLikeMe. Sorsha concluded that as patients and doctors are increasingly moving online (a recent study found 42% of people search for health information online, with trend predicting a rapid increase in this figure), patient groups must embrace online communications to reach out to patients and provide accurate information.


Stefi Rucci - Say Communications

Stefi Rucci from Say Communications followed, exploring how patient groups can work with the media. Stefi highlighted key challenges facing rare disease groups in getting media attention, such as: competition; clashes with media’s own agenda; small patient populations and; relevance to the public. She then delved into how these challenges could be overcome through building a compelling story, targeting for high impact, and finally positioning the patient group as an expert in the field. Stefi stressed the importance of being proactive and piggy-backing on current issues to effectively raise awareness of the patient group’s work and condition.


Anastasios Koutsos - Ogilvy Healthworld

After a discussion sessions and a short break, our third speaker Anastasios Koutsos from Ogilvy Healthworld stepped up to the podium. His presentation perfectly complimented Stefi as he delved into how to build a compelling story for the media, focusing on the need for emotional connection, simplicity, and creativity. Anastasios then walked through the practical steps to writing press releases and explained ‘a day in the life of a journalist’, highlighting the best time to contact journalists with a story.


Lara Chappell - EURORDIS

Our final speaker, Lara Chappell from EURORDIS, then spoke about setting up awareness days for rare diseases. Her presentation brought together all the elements of the previous three speakers: the need for engagement from social media, developing media interest, and developing website content. Lara emphasised the need for awareness days to be led by patient groups in order to avoid corporate interests dominating the day. She stressed the need for collaboration, developing joint communication materials, and identifying clear objectives for the awareness day instead of vaguely aiming for international recognition.


We would like to thank all the presenters for giving interesting and insightful talks, the Two Visual Thinkers for their amazing graphics, Eve for photographing, the Royal College of Nursing for the wonderful venue and catering, the AKU Society for sponsoring the day, and all of our attendees for joining us at the workshop!


Introduction to communications

by Libbie Read time to read: 4 min