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.

ECRIN, Collaborating with European Countries in E-Rare Clinical Trial Projects

ECRIN, Collaborating with European Countries in E-Rare Clinical Trial Projects

A Partner for Multinational Trial Management
Managing a multinational clinical trial raises multiple challenges for investigators and sponsors. ECRIN, a non-profit research infrastructure, helps organisations to facilitate trials by coordinating various management tasks (regulatory and ethical submissions, adverse event reporting, monitoring, data management, etc). Currently a partner in ongoing trials funded by the 7th Framework Programme for Research and Technological Development (FP7) and Horizon 2020 (H2020), ECRIN is available to support groups in all European countries in clinical trials for treatment repurposing supported by the E-Rare 3 Call for Proposals 2016 (JTC 2016).

For more information on how ECRIN can support E-Rare trial projects, please contact the European Correspondent in your country (details below). If your country is not listed, you may contact the ECRIN Coordination Team at ecrinonboard[at]ecrin.org.
•    France, Amelie Michon: amelie.michon[at]ecrin.org; +33 (0)5 34 55 75 92
•    Germany, Anke Strenge-Hesse: anke.strenge-hesse[at]uk-koeln.de; +49 (0) 221 478 89331
•    Hungary, ecrinonboard[at]ecrin.org
•    Italy, Lucia Palmisano: l.palmisano[at]iss.it; +39 06 49903307
•    Portugal, Catarina Madeira: catarina.madeira[at]fcm.unl.pt; +351 91 400 67 26
•    Spain, Joaquín Sáez-Peñataro: jsaez[at]clinic.ub.es and Mohammed Ezzeldin Sharaf: mezzeld[at]clinic.ub.es; +34 93 227 93 28

ECRIN-On-Board: Supporting E-Rare Funding Applications for ECRIN Member Countries
In addition, ECRIN is offering support for applications to the E-Rare 2016 call to principal investigators from its Member Countries (France, Germany, Hungary, Italy, Portugal, and Spain) through its “ECRIN-On-Board” programme. Support areas include:
1 – Independent methodological recommendations on protocol development
2 – Consulting on trial logistics and management (regulatory and ethical requirements, monitoring strategies, insurance, contracting, costs, investigation sites, etc.)
3 – Advice on E-Rare applications (consortium organisation, work packages, budget, project management)
ECRIN-On-Board support is provided for free on a first-come, first-serve basis. Interested parties should send a summary description of the trial protocol based on pages 6-9 of the Full Proposal Application form (available on the E-Rare website) to the European Correspondent in their respective country as well as to the ECRIN-On-Board focal point (see contacts above) by January 5th, 2016. Applications will be dealt with under the strictest confidentiality. Proposal applications will be reviewed by ECRIN-On-Board and feedback will be provided within three weeks (by end January), giving principal investigators another month to modify their projects as needed before submission to E-Rare (deadline: March 3rd, 2016).

E-Rare 2012 - Created by Toussaint Biger