Introduction

Many rare diseases cause chronic health problems or are even life-threatening. Genetic factors playa role in a majority of these diseases. The impact on the quality of life of affected patients, of whommany are children, is significant. To support action in this field, in 2017 the European Commissionlaunched the two-year pilot project Rare 2030, led by a research team. A continuous bottom-upapproach is used so as to put more emphasis on interaction and to encourage a broad take-up bypatients, stakeholders and society at large of approaches developed at EU level. The purpose of thepilot project is to propose sustainable policy scenarios in the field of rare diseases for the period2020-2030 and to address challenges and opportunities up until 2030 in a comprehensive andinnovative manner, with particular emphasis on limited competences at EU level.

Content of project proposals

The methodological steps and timeline for Rare 2030 will include different work packages:

- base research, including literature reviews and exploratory interviews to identify drivers ofchange and current and future challenges;

- establishment of an expert / multi-stakeholder panel;

- consensus building methods will be used to define the main drivers (political, scientific, etc.)for scenario building and will be open to large groups of stakeholders on a European level;

- an interdisciplinary and forward-looking workshop for scenario building will be used as atool to reveal available choices and their potential consequences; the scenarios developedwill take into account resources at EU level, and include options to use the existingstructures better, in particular the framework of the European Reference Networks (ERN)and the Steering Group on Promotion and Prevention (SGPP).

- extended patient consultation (survey) on the identified scenarios;

- a European ‘consensus conference’ to present, discuss and review results, engaging societyto shape and take ownership of the outcomes;

- identification of sustainable options for future action, bringing together the results of thescenarios and conference;

- a final report, in English, outlining the options for future action and outcomes of the projectand measuring its impact.

All project activities will be implemented in close collaboration with relevant Commission services,and relevant EU-funded activities in the area of rare diseases (e.g. Joint Action on Rare Diseases,International Rare Diseases Research Consortium, future EJP on rare diseases).

Eligible applicants

The applicants must be legally established organisations, public authorities, public sector bodies, inparticular research and health institutions, universities and higher education establishments.

Partnership criteria

Proposals must be submitted by consortia of legal entities established in at least 2 different EUMember States.

Funding

The maximum rate of co-financing of the eligible total costs is 60%.

Project duration

24 months

More information at

http://ec.europa.eu/research/participants/portal/desktop/en/opportunities/pppa/topics/pp-1-2-2018.html