20 December 2013   ●   Issue 3

EU launches Horizon 2020 calls

Horizon 2020 - the new Framework Programme for Research and Innovation - is the successor to the Seventh Framework Programme for Research and Technological Development (FP7) and will fund EU research and innovation between 2014 and 2020. The European Parliament gave consent to the EU 2014-2020 budget which includes € 80 billion for Horizon 2020 - a 30% increase from the current FP7 Programme.

This programme is intended to form a key part of the overall drive to create new growth and jobs across Europe and has the political backing of Europe's leaders and the Members of the European Parliament.

Horizon 2020 calls are open to everyone, with a simple structure that reduces red tape and time so participants can focus on what is really important. This approach makes sure new projects get off the ground quickly and achieve results faster.

Further reading:

Horizon 2020 launched with €15 billion over first two years

Health work programme 2014 – 2015 (pdf)

Research infrastructures work programme 2014 – 2015 (pdf)

E-Rare Joint transnational call

The E-Rare 6th Joint Transnational Call for Research Projects on Rare Diseases (JTC 2014) is now opened. A total of 16 countries will participate in this call: Austria, Belgium (Flanders), Canada (including Québec), France, Germany, Hungary, Israel, Italy, Latvia, Poland, Portugal, Romania, Spain, Switzerland, The Netherlands and Turkey.

This year the call is specifically dedicated to development of innovative therapeutic approaches for rare diseases. The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear translational research approach. Projects shall involve a group of rare diseases or a single rare disease following the European definition (a seriously debilitating and/or life-threatening disease affecting not more than 5 in 10.000 people).

Research projects must focus on the pre-clinical development of therapeutic approaches in suitable existing animal or cell models. Therapeutic approaches can include (but are not limited to): cell based therapy; gene therapy and pharmacological therapy.
Rare infectious diseases, rare cancers and rare adverse drug events in treatment of common diseases are excluded from the scope of the call.

The deadline for pre-proposal submission is 30 January 2014.

For more information, call text, guidelines, national contact points and all specific documents visit the E-RARE website.

Update on national rare disease plans across Europe

As 2013 draws to a close, EU countries are busy formulating, adopting, implementing, or renewing their strategies for providing care and services to rare disease patients as urged by the Council of Europe Recommendation of 8 June 2009 on an action in the field of rare diseases.

This document calls upon all Member States to produce and adopt a national plan or strategy for rare disease by the end of 2013. The challenge has been met by each Member State in different ways; France, for instance, has had a national rare diseases plan since 2004 and adopted its second, revised plan in 2010. However, despite the approaching deadline, many countries have yet to officially adopt their plans.

The European Project for Rare Diseases National Plans Development (EUROPLAN), through the EUCERD Joint Action, help countries define their rare disease priorities and undertake the process of elaborating a national strategy involving all relevant stakeholders.

The ultimate goal of a strong national plan for rare diseases is to enable each country to approach healthcare more strategically and less ad hoc than has previously been the case. There is a need to encourage countries to think on a grander scale here - when conditions are individually rare and expertise is limited and scattered geographically, a collaborative approach to diagnosis, treatment and care is essential. There should be clear, robust healthcare pathways to enable patients to receive the help they need, and it is increasingly recognised that this demands collaboration not just within countries but between them.

Further reading:

As the end of 2013 approaches, what is the status of EU national rare disease plans?

National plans or strategies for rare diseases

Rare Disease Day 2014

The 7th Rare Disease Day will take place on 28th February 2014. Since its launch in 2008, Rare Disease Day has become an annual event involving thousands of patient groups and others from around the world.

Coordinated by RD-Connect partners EURORDIS at the international level and by national alliances and patient organisations at the national level, this day provides a unique opportunity to raise awareness about rare diseases and the impact they have on patients' lives.

A variety of awareness-raising activities will take place in Europe, Australia, Japan, the USA and other countries throughout the world. For more information visit the Rare Disease Day website or follow them on Twitter @rarediseaseday

ELIXIR launch establishes sustainable European research infrastructure for life science data and bioinformatics

The ELXIR founding ceremony and official launch took place on 18th December 2013 in Brussels, Belgium. This event marked the ratification of the ELIXIR Consortium Agreement and the launch of ELIXIR as Europe's sustainable research infrastructure for biological data. Presentations from the event are now available online.

The goal of ELIXIR is to orchestrate the collection, quality control and archiving of large amounts of biological data produced by life science experiments. As an ESFRI infrastructure, ELIXIR is a key part of Europe's strategy for scientific integration and innovation.

RD-Connect partner the European Bioinformatics Institute (EMBL-EBI) host the ELIXIR Hub which supports the coordination of ELIXIR activities across Europe.

For further information visit the ELIXIR website.



7th European Conference on Rare Diseases and Orphan Products

8-10 May 2014, Berlin, Germany

The three-day European Conference on Rare Diseases and Orphan Products (ECRD) will provide an opportunity for patients, policy makers, healthcare professionals, industry, payers, regulators, researchers and academics working in the rare disease field to meet and exchange information and ideas. With over 100 speakers and numerous professionals in attendance, the annual conference will cover the latest research, developments in new treatments and information regarding innovations in health care, social care and support at both the European and national levels.

Abstract deadline has been extended to: Friday 14th January 2014.

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