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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. Additionally, patients, caregivers and advocates on our advisory board committee have participated in our non-profit radio blog PharmaTalkRadio, where we provide free access to helpful information for those in the life sciences arena.
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 that discusses the patient’s voice in designing clinical trials and endpoints along with vastly improving 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 3rd Annual Patients as Partners program include, but are not limited to:
- Alastair Kent, Director, Genetic Alliance UK
- Claire Bale, Head of Research Communications and Engagement, Parkinson’s UK
- Richard Stephens, Patient / Consumer Lead, Chair Consumer Forum, National Cancer Research Institute
- Marleen Kaatee, Training Graduate / Founder & President, EUPATI / PSC Patients Europe
- Jan Geissler, Director, European Patients’ Academy on Therapeutic Innovation (EUPATI)
- Oliver Timmis, CEO, AKU Society
Patients, caregivers, and patient advocates will lead or participate in the following panels:
- Patient and Industry Perspectives on the Importance of Patient Involvement in the Lifecycle of Medicines
- Innovative Ways of Patient Involvement in Medicines Development
- Roundtable Discussion: How Industry and Patients Can Work Collaboratively to Achieve Joint Goals in Medicines Development
- Panel: What Can We Do Together to Ensure Access?
- Patients Influencing Policy
- Advancing the Informed Consent Process
- Patient & Advocate Perspective Panel: Putting EUPATI Training into Action
Follow the Patients as Partners Europe discussions on Twitter using hashtag #PatientsEU2017