The European Joint Programme on Rare Diseases (EJP RD) has published the pre-announcement for the Joint Transnational Call 2020. This call is for proposals on "Pre-Clinical Research to Develop Effective Therapies for Rare Diseases".

For more information please visit the EJP RD website: http://www.ejprarediseases.org/index.php/joint-transnational-calls/

Rare Disease Day 2020 will be celebrated this year on Saturday the 29th of February - a fittingly rare date! Coordinated by EURORDIS in partnership with National Alliances, the aim is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Lead-up events throughout the month will be organised by members of the rare disease community including patient organisations, healthcare professionals, researchers, and policymakers across 101 countries.

Rare diseases will affect 1 in 20 people in their lifetime, but their rarity often leads to delays in diagnosis, and means that information and treatment options can be limited. Rare Disease Day is an opportunity to strengthen international cooperation, vital for identifying and classifying these diseases, coordinating research, and providing access to treatment and support for patients, their families, and carers.

For more information, go to the Rare Disease Day 2020 website.

 

The European Rare Disease Models & Mechanisms Network (RDMM-Europe) has been established by Solve-RD – an EU-funded research project. The overall aim is to boost research in rare diseases, discover new disease-causing genes and obtain evidence for pathogenicity through functional validation.

For more information, visit the following website.

News & Media

The European Joint Programme on Rare Diseases (EJP RD) has published the pre-announcement for the Joint Translational Call 2020. This call is for proposals on "Pre-Clinical Research to Develop Effective Therapies for Rare Diseases". For more information please visit the EJP RD website: http://www....
The CORBEL webinar series continues in June : Genomics and clinical data at your fingertips with open-source software: tranSMART & cBioPortal on June 4 2019. There is a need for tools that integrate genomics and other molecular biology results with the phenotypic and clinical outcome data. This...
The International Prize for Scientific Research Arrigo Recordati is open to researchers of all nationalities studying rare disorders. The deadline to submit pre-proposals is December 15, 2018. The winner project will be announced during an Award Ceremony at the 2019 Society for the Study if...
The second Stakeholder Meeting of INFRAFRONTIER, the European Research Infrastructure for phenotyping and archiving of model mammalian genomes, will be jointly organized with the International Mouse Phenotyping Consortium (IMPC). Thematic focus of the meeting is on advancing Rare...
The European Commission is launching an online targeted public consultation on the draft guidelines on good clinical practice for Advanced Therapy Medicinal Products (ATMPs) addressed particularly to small and medium-sized enterprises (SMEs), academia, hospitals and patient organisations. The...
  PARADIGM, a collaborative IMI project that aims to make meaningful patient engagement in medicines development a reality, such as through better tools and recommendations was launch last March.    The objective is to develop processes and tools for three key decision-making points: research...
Apply by October 31st, 2018 for Corbel Open Call ! The CORBEL Open Call invites researchers to apply to access technologies and services from more than 20 facilities from 10 different research infrastructures across Europe. Selected projects will gain unprecedented opportunities to utilise a wide...
Dear Colleagues, As you may have heard, the new General Data Protection Regulation (GDPR) comes into effect May 25, 2018. Your privacy comes first!   As you are part of E-Rare community and has expressed interest in our calls, conferences and rare diseases related news OR registered into our "...
The European Commission's Joint Research Centre (DG JRC), together with DG SANTE, is developing the EU Rare Diseases Registries Platform. The Platform aims to cope with the enormous fragmentation of RD data contained in RD patient registries across Europe by promoting EU-level standards for data...
The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. IRDiRC, officially launched in 2011, was originally conceived with two main goals: to contribute to the development of 200 new therapies and the means to diagnose most rare...

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