Nachricht EURORDIS 2012

Call for poster abstracts

We would like to encourage patient organisations, academics, health care professionals and all other interested parties having conducted research or studies on rare diseases or public health projects to submit a poster abstract to the 6th European Conference on Rare Diseases and Orphan Products (ECRD 2012 Brussels).

The themes mentioned below suggest topics the Programme Committee would like to have addressed and should serve as a valuable guide as you develop your poster abstract.

You are invited to submit poster abstracts that fall within the following themes:

Theme 1: National Plans for Rare Diseases: Innovative approaches and methodology for the implementation of national plans for rare diseases. Measures and indicators to follow the progress of national plans.

Theme 2: Centres of Expertise (CoE) & European Reference Networks (ERN): Concepts developed over the past 5 years; heterogeneity of CoEs and ERNs; strengths and limitations of expanding such initiatives on a larger scale; mobility of patients and the mutualisation of expertise to ensure optimum care for patients; how best to organise ERNs at a European and international level and understanding the specific issues involved.

Theme 3: Information & Public Health: Actions led by patient organisations and/or health care professionals in the revision of the international classification of diseases; medical education training: the training of health care professionals about rare diseases and the role of patients in this training; information exchange and legal barriers: examples of projects overcoming barriers.

Theme 4: Research from Bench to Bedside: How to bring innovative medicines to a broader set of diseases; databases and registries as tools to foster research; the role of -omics in rare disease research; translational research: from basic research to useful applications and successful projects.

Theme 5: Orphan Products & Rare Disease Therapies: The role and involvement of patients' organisations in clinical trials; recommendations on how to improve access to orphan drugs through international collaboration; Health Technology Assessment (HTA) for orphan medicinal products; examples of re-purposing of drugs for rare diseases.

Theme 6: Patients' Empowerment: How helpline services can be structured to develop best practices and provide both medical and social information; respite care services or therapeutic recreation programmes; patients' generated knowledge; experience with PlayDecide; patients and internet: successful uses and/or limits of social media.

Theme 7: Rare Disease Patient Groups Innovations: Innovative strategies/approaches/services or projects which could potentially be useful to other patient groups/health care professionals/academia or which deserve to be promoted internationally and recognised by National and European authorities.

Theme 8: Other/open topic: What would you like to say about your disease, your actions, your vision?