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Identifying rare disease patients workshop

Our second workshop of 2015 explored the different ways patient groups can identify patients in order to offer them support and involve them in research.

Findacure held its first training workshop of the year on the topic of identifying rare disease patients. The workshop took place at the White & Case LLP offices, with 36 patient groups, researchers, and pharmaceutical representatives attending.

The day opened with an introduction from Flóra Raffai, our Head of Development, who shared feedback from our pilot training workshop programme which ran throughout 2014. She explained that of the attendees, 67% were unaware of any other organization offering training and support to rare disease patient groups. As a result of this, and the overwhelmingly positive comments we received, we will be continuing to run our training workshops throughout 2015 and onwards.

Christa van Kan - PSR

The first speaker of the day was Christa van Kan from PSR, a contract research organisation (CRO) based in the Netherlands. Christa presented her insights that due to the small patient population numbers in rare diseases, different strategies need to be put in place to identify and recruit patients to clinical trials, as opposed to trials for common conditions. She recommended a network of CROs, expert clinicians, patient groups, and patients working closely together as the best way forward.

Christine Lavery - MPS Society

Christine Lavery from the MPS Society followed, who shared her experience of setting up the patient group 33 years ago. Key thoughts from her presentation was to keep patient support at the heart any work the group engages with, avoiding getting to hung up on research to forget those patients who will not directly benefit. She also strongly recommended that patient groups take control of clinical research and patient registries, to become key partners in the process to ensure patients’ needs are not forgotten.

Pete Chan - Tudor Reilly Health

Following a discussion session and a break with delicious macaroons and cakes provided by White & Case LLP, our third speaker, Pete Chan from Tudor Reilly Health, presented on online methods to identify and recruit patients. Pete shared a study which has shown that for the first time, people are turning to the internet for health information, instead of their primary or even secondary health providers. As a result, it is important to have clear websites with health information written in an accessible language, not only for your rare condition but for any clinical trial you are looking to set up.


Marta Campabadal - RareConnect

Our final speaker of the day was Marta Campabadal from RareConnect, who provided a very useful overview of different online platforms patient groups can use to identify patients. She explained the pros and cons associated with Facebook, Google, Twitter, and other platforms, and shared her top ‘social listening’ tools as well.


We would like to thank all the presenters for giving interesting and insightful talks, the Two Visual Thinkers for their amazing graphics, Sorsha for photographing, White & Case LLP for the wonderful venue and catering, and all of our attendees for joining us at the workshop!


How to identify rare disease patients

by Libbie Read time to read: 6 min