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The Patients Included charter provides conference organizers with a means of demonstrating that their events are committed to incorporating the experience of patients as experts in living with their condition while ensuring they are neither excluded nor exploited. Patients Included status is self-assessed. A conference successfully meeting all five of the charter’s clauses may accredit itself as a Patients Included event. The Patients as Partners Europe conference fulfills the five Patients Included charter clauses in the following ways:
Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
- Patients, caregivers and advocates were invited to join the advisory board planning committee where they provided significant input on content development, potential speakers and community outreach.
Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
- Patients, caregivers and advocates were invited to participate in the program and will be leading panel discussions on what they want to see the industry undertake to vastly improve the patient’s entire experience across the entire clinical development continuum.
Travel and accommodation expenses for patients or caregivers participating in the advertised program are paid in full, in advance. Scholarships are provided by the conference organizers to allow patients or caregivers affected by the relevant issues to attend as delegates.
- Patients/caregivers on the speaking faculty qualify for expense coverage for travel and participation at the conference, payable in advance if requested. The conference organizers have allocated a budget that covers their registration, travel and accommodation expenses. Additionally, there are scholarships available to assist patients in clinical trials who can benefit from the information at the event, but cannot afford the registration fee. There is a reduced registration as well for full time patient advocates. For information on how to apply for a scholarship, please email Customer Service.
The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other program elements are open to patient delegates.
- All on-site events presented by The Conference Forum provide disability accommodations.
Access for virtual participants is facilitated, with free streaming video provided online wherever possible.
- The audio from the conference sessions will be available post event to our patient and caregiver attendees via our website along with the presentations that will be made available for download once the event concludes. The Conference Forum will provide links to the attendees for access.
Patients, caregivers, and patient advocates who will be participating in the 2nd Annual Patients as Partners program include, but are not limited to:
- Alastair Kent, Director, Genetic Alliance UK
- Claire Nolan, Research Involvement Manager, Parkinson’s UK
- Richard Stephens, Patient / Consumer Lead, Chair Consumer Forum, National Cancer Research Institute
- Jan Geissler, Director, European Patients’ Academy on Therapeutic Innovation (EUPATI)
- Chris Macdonald, Research Involvement Manager, Arthritis Research UK
- Bettina Ryll, Founder, Melanoma Patient Network Europe
- David Haerry, Patient and Advocate, European AIDS Treatment Group
- Viorica Cursaru, Patient Advocate, Myeloma Euronet Romania
Follow the Patients as Partners Europe discussions on Twitter using hashtag #PatientsEU2018