INVITATION: ‘How To Identify Rare Disease Patients’ Workshop – 30th January

News and events from our members

Attend a ‘How To Identify Rare Disease Patients’ workshop run by Findacure - 30 Jan, London

As part of Findacure’s series of trainings for patient groups, our next workshop will be taking place on Friday, 30th January, on the topic of identifying people living with rare diseases.

The workshop will be a half-day event from 1:30pm to 5:30pm in central London (near Bank station). The day will explore different methods for identifying patients in order to build communities and recruit for clinical research. Throughout the day, there will be short group discussion sessions where delegates will be able to share their own experiences and work together to apply the advice from the day to their own organisations. To see the schedule for the workshop, please click on the image.

If you would like to attend, please email Flóra (flora@findacure.org.uk) by Friday, 16th January 2015.

“How To Identify Rare Disease Patients” Workshop
White & Case LLP, 5 Old Broad Street, London, EC2N 1DW
30th January 2015, 1:30pm – 5:30pm
1:30 – 2:00pm Registration
2:00 – 2:10pm Welcome from Findacure
2:10 – 2:40pm ‘Patient recruitment in rare disease clinical trials’ – Christa Van Kan, PSR
2:40 – 3:10pm ‘Using online tools in rare disease: from theory to practice’ – Pete Chan, Tudor Reilly Health
3:10 – 3:30pm Discussion session
3:30 – 4:00pm Tea/Coffee break
4:00 – 4:30pm ‘Uniting your rare disease crowd and connecting isolated patients to information’ – Marta Campabadal, EURORDIS
4:30 – 5:00pm ‘Case Study: MPS Society UK’ – Christine Lavery, MPS Society UK
5:00 – 5:20pm Discussion session
5:20 – 5:30pm Conclusion of workshop