28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. The theme for Rare Disease Day 2019 is 'Bridging health and social care'.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

For more information, check this website.

 

PARADIGM, a collaborative IMI project that aims to make meaningful patient engagement in medicines development a reality. The objective is to develop processes and tools for three key decision-making points: research priority setting, design of clinical trials and early dialogue with regulators and HTA bodies. Share your opinion and experience on patient engagement NOW! Learn more HERE

 

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.
Learn more HERE

 

The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. See the publication HERE.

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