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Findacure: Lessons Learnt On Identifying Rare Disease Patients

February 6, 2015

The Orphan Druganaut Blog is honored to have Flóra Raffai, the Head of Development from Findacure, as a Guest Blogger. Findacure is a charity which focuses around fundamental diseases – rare, often genetic, diseases from which the basic mechanisms of dysfunction can be extrapolated and applied to our understanding of more common conditions.

The fifth workshop in Findacure’s series of training workshops took place this past Friday, 30th January, in central London. Findacure’s workshops are aimed at rare disease patient advocates and support groups, providing practical advice from experts and successful patient groups to build the collective knowledge of the rare disease community. This most recent workshop focused on the topic of how to identify rare disease patients, with four speakers from the contract research organisation PSR, the internationally renowned patient group the MPS Society, the digital healthcare communications company Tudor Reilly Health, and the joint NORD and EURORDIS project RareConnect.

A clear lesson from the workshop was that traditional methods for identifying patients and/or recruiting them for clinical trials do not apply to rare diseases. Due to small patient numbers, which are usually spread out across countries, typical strategies of putting health information posters in waiting rooms of hospitals and GPs, or even advertisements in newspapers or magazines will not be effective. Nor will contacting clinicians, as most doctors will never encounter a specific rare disease in their entire career. The way forward therefore is to create awareness and to more directly target patients.

And the way to do that is through the Internet. A recent study from the Centre for Information & Study on Clinical Research Participation (CISCRP), involving 5,701 patients from 19 countries, found that the internet is now the top source of clinical trial information. As a result, groups looking to identify patients must have a strong presence on the internet, whether to recruit for clinical trials or find patients to support. In terms of clinical trials, it was recommended for groups to first build a specific health website, which then links to a dedicated clinical trial website, containing a questionnaire allowing patients to register their interest for participation.

To identify patients to include in advocacy and support work, the speakers stressed the importance of using social media channels, such as Facebook and Twitter, and to actively engage in social listening, using tools such as Hootsuite and FollowerWonk. Through following conversations on social media, groups can identify potential patients and key influencers who can promote the services of the group.  Furthermore, the speakers emphasised the benefit of using Google Ads. By creating ads that correspond to symptom searches (for example; black urine, dark spots in the eye), patients without diagnoses can be directed to the dedicated health website and seek further help.

A key message emphasised throughout the workshop was that by having specialised knowledge and empathy, patient groups are best placed to reach out to patients. As a result, patient groups should lead in advocacy, support services, and trial recruitment in the rare disease field. However, a word of warning was raised, that patient groups should not get hung up on a single focus as an organisation, for example, only supporting research, which can isolate patients who may not be able to benefit. Additionally, patient groups need to remember that as treatments are developed, their patient demographics may change as people can live healthier lives longer, and to take that into consideration when trying to identify patients.

For further lessons and thoughts from the workshop, follow the links below to videos of each speakers’ presentations :

◦   Christa van Kan, PSR – Patient Recruitment in Rare Disease Clinical Trials

◦   Christine Lavery, the MPS Society – Developing Excellence in Rare Diseases: The MPS Society Experience

◦    Pete Chan, Tudor Reilly Health – Using Online Tools in Rare Disease: From Theory to Practice

◦    Marta Campabadal, RareConnect – Uniting Your Rare Disease Crowd and Connecting Isolated Patients to Information.

If you are interested in finding out more about future Findacure events, contact Flóra Raffai via

Logo courtesy of Findacure.

Copyright © 2012-2015, Orphan Druganaut Blog. All rights reserved.


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