CONFERENCIA EUROPEA SOBRE ENFERMEDADES RARAS Y PRODUCTOS HUÉRFANOS
The European Conference on Rare Diseases & Orphan Products (ECRD) is the largest multi-stakeholder event in Europe for the rare disease community. The ERCD 2016 Edinburgh will gather more than 800 people to address the issues that matter today and to anticipate the needs of tomorrow, so that innovative and sustainable responses can be developed and delivered for people living with a rare disease.
More information about ECRD 2016 Edinburgh is available here: www.rare-diseases.eu
From this survey, we would like to identify four speakers who will be invited to attend the Conference and deliver a 10-minute presentation in English in the session: ‘Innovative “game-changing” collaborations between industry and patient organisations.’ This session will take place on Saturday, 28 May from 11.00 to 12.30.
Programmes will be assessed based on their innovative approach to incorporating patients (and their families and advocates) into one of the following phases of the research continuum: discovery and development; approval and use; access; disease awareness and patient support. To qualify, programmes must, at a minimum, involve industry and patient representation. Multi-stakeholder groups that include these two groups are welcome to apply. Evidence of programme evaluation is strongly preferred, and no candidate will be disqualified based on the poor success rate of the programme. Low cost programmes are welcome to apply. Programmes that help patients for whom there is no available treatment are especially encouraged to apply. Geographic diversity and location of the programme’s intervention along the research continuum will be determining factors in the final selection of the speakers.
Please note that only four programmes will be selected to be represented in the panel. However, all programmes that match the criteria detailed above, and that have granted permission, will be compiled and published online. Moreover, the Conference will include a luncheon in which truly exemplary programmes will be showcased; programmes not selected for the panel may be invited to participate. Please exercise caution when filling out the questionnaire as all answers are final and the text you input into this survey will be the text used for publication. The panel will be conducted in English and only English responses to the survey will be validated.
We look forward to hearing from you!
Submissions are reviewed by the session chair and an ad hoc committee within EURORDIS. You will be contacted if we would like you to speak.
Deadline to respond: 18th December 2015
More information about ECRD 2016 Edinburgh is available here: www.rare-diseases.eu
From this survey, we would like to identify four speakers who will be invited to attend the Conference and deliver a 10-minute presentation in English in the session: ‘Innovative “game-changing” collaborations between industry and patient organisations.’ This session will take place on Saturday, 28 May from 11.00 to 12.30.
Programmes will be assessed based on their innovative approach to incorporating patients (and their families and advocates) into one of the following phases of the research continuum: discovery and development; approval and use; access; disease awareness and patient support. To qualify, programmes must, at a minimum, involve industry and patient representation. Multi-stakeholder groups that include these two groups are welcome to apply. Evidence of programme evaluation is strongly preferred, and no candidate will be disqualified based on the poor success rate of the programme. Low cost programmes are welcome to apply. Programmes that help patients for whom there is no available treatment are especially encouraged to apply. Geographic diversity and location of the programme’s intervention along the research continuum will be determining factors in the final selection of the speakers.
Please note that only four programmes will be selected to be represented in the panel. However, all programmes that match the criteria detailed above, and that have granted permission, will be compiled and published online. Moreover, the Conference will include a luncheon in which truly exemplary programmes will be showcased; programmes not selected for the panel may be invited to participate. Please exercise caution when filling out the questionnaire as all answers are final and the text you input into this survey will be the text used for publication. The panel will be conducted in English and only English responses to the survey will be validated.
We look forward to hearing from you!
Submissions are reviewed by the session chair and an ad hoc committee within EURORDIS. You will be contacted if we would like you to speak.
Deadline to respond: 18th December 2015
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