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Marfan Hilfe (Deutschland) e.V.

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?

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